Developmental Disability Providers & Support: Youth to Adulthood
Disclaimer
Horizons to Hope provides resources for informational purposes only and does not endorse or recommend any listed provider or service. Users are encouraged to conduct their own research and due diligence before engaging with any resources referenced on this site. Horizons to Hope strives to provide accurate and reliable information; however, we cannot guarantee the completeness or validity of external content. We assume no responsibility for errors, omissions, or the services offered by linked providers.
Bucks County
Down Syndrome (Trisomy 21)
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Resources:
Bucks County Down Syndrome Interest Group (BCDSIG)
Local support group for families — peer support, events, resource & info sharing.
Phone: (215) 290-3118
Website: https://bcdsig.wordpress.comNational Down Syndrome Society (NDSS)
Information, advocacy, local support groups, guides for early intervention, and educational & healthcare resources.
https://ndss.org/National Institute of Child Health and Human Development (NICHD)
Research, health info, resource links for patients and families.
https://www.nichd.nih.gov/health/topics/downsyndromeMayo Clinic
Overviews of diagnosis & treatment. Helps with guidance on what to expect medically.
https://www.mayoclinic.org/diseases-conditions/down-syndromeChildren’s Hospital of Philadelphia (CHOP)
“Trisomy 21 Toolkit for Transitioning to Adult Medical Care” and broader resources.
https://www.chop.edu/caring-for-your-childDown Syndrome Diagnosis Network (DSDN)
National parent network that provides peer support, family connections, and advocacy.
https://www.dsdiagnosisnetwork.org/
Rett Syndrome
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Resources:
The Medical Center at Woods (Bucks County)
Outpatient care specializes in people with disabilities.
Offers high-quality, compassionate outpatient services for a wide range of illnesses and injuries, including chronic disease management, acute care, women’s health, men’s health, vaccinations, blood work, X-rays, etc.
Focus on treating people with intellectual and developmental disabilities, autism, behavioral challenges, and those with medical complexities.
Staff trained to work with special needs patients, including nonverbal communication, sensory accommodations, and other supports.
Provides medical, dental, and behavioral health care specialized for this population.
Website: https://www.woods.org/
Bucks County Department of Behavioral Health / Developmental Programs (BH/DP)
Administers behavioral health, developmental, intellectual disability, autism, and mental health services for Bucks County residents.
Developmental Programs include Early Intervention, Intellectual Disabilities / Autism (ID/A) services.
Supports Coordination helps with finding, coordinating, and monitoring services.
Services range from companion care to 24-hour residential support, based on assessed need.
Also covers mental health services, managed care, crisis services, peer support, and case management.
Website: https://www.buckscounty.gov/601/Behavioral-Health-Developmental-Programs
Bucks County Intellectual Disabilities / Autism (ID/A) Services
Administered locally by Bucks County BH/DP under the Pennsylvania Office of Developmental Programs (ODP).
Eligibility includes intellectual disability, autism spectrum disorder, developmental disability (for children age 8 or younger), or children with medical complexities up to age 21.
Offers Supports Coordination to help individuals locate, coordinate, and monitor needed services.
Services are varied based on assessed needs: companion care, residential supports, etc.
Website: https://www.buckscounty.gov/643/Intellectual-DisabilitiesAutism-Servic
Children’s Hospital of Philadelphia (CHOP) – Rett Syndrome Clinic
Provides multidisciplinary clinical care for children with Rett syndrome or related conditions (e.g., FOXG1 syndrome, MECP2 duplication).
Services include:
• Diagnosis/genetic testing (if not yet established).
• Management of medical issues (seizures, nutrition, gastrointestinal, growth, tone/spasticity, sleep disturbances).
• Therapies: physical, occupational, speech (including augmentative/alternative communication).
• Rehabilitation and equipment needs (seating, mobility).
• Social work collaboration for resources and family support.Involved in research: Natural History of Rett Syndrome and Related Disorders study; observational and interventional trials; biomarker development; wearable technologies.
Links:
Clinic page: https://www.chop.edu/centers-programs/rett-syndrome-clinic
Preparing for your appointment: https://www.chop.edu/pages/preparing-your-rett-syndrome-clinic-appointment
Fragile X Syndrome
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Resources:
Children’s Hospital of Philadelphia (CHOP) Fragile X / Trinucleotide Repeats Clinic
CHOP’s Neuroscience Center includes a clinic for “Trinucleotide Repeats: Fragile X Syndrome.”
Provides evaluation, management, and treatment of children and adolescents with Fragile X Syndrome and related genetic disorders.
A developmental pediatrician, Amanda E. Bennett, MD, MPH, specializes in Fragile X syndrome and provides care for children from birth through age 18.
Services include medical evaluation, developmental assessment, and family support.
CHOP is a member of the Fragile X Clinical & Research Consortium (FXCRC), giving families access to research and guidance for transitioning to adult care.
Links:
CHOP Fragile X info: https://www.chop.edu/conditions-diseases/trinucleotide-repeats-fragile-x-syndrome
Amanda E. Bennett profile: https://www.chop.edu/doctors/bennett-amanda-e
Geisinger Fragile X Clinic — Autism & Developmental Medicine Institute (ADMI)
Offers a comprehensive package of developmental services for individuals with Fragile X and family support.
Multidisciplinary: medical, behavioral, genetic counseling, assessment services, speech-language pathology, psychology, special education, etc.
Leads or participates in genetic testing and is part of the Fragile X Clinical & Research Consortium.
Provides consultation to schools, agencies, and families both locally and at a distance.
Links:
Fragile X Clinic page: https://www.geisingerdevmed.org/fragile-x-clinic
ADMI Referral/Services: https://www.geisingerdevmed.org/refer-to-devmed
Elwyn – Training & Research / Related Services
Large nonprofit organization based in Pennsylvania, offering a broad continuum of services for people with intellectual, developmental, and behavioral health needs.
Key Services:
Early Learning Services (ELS) – Preschool early intervention services for children ages 3 up to school-age. Includes developmental evaluation, intake, individualized education planning, case management.
Educational Services – Customized educational programs in partnership with school districts and charter schools, supporting students to reach maximum potential.
Intellectual and Developmental Disabilities Services – Support for children and adults with a variety of developmental disabilities.
Behavioral Health Services (Children’s & Adult) – Mental/behavioral health supports across ages.
Crisis Services – For urgent intervention.
Links:
Main website: https://www.elwyn.org/
Early Learning Services: https://www.elwyn.org/services/early-learning-services
Educational Services: https://www.elwyn.org/services/educational-services
National Fragile X Foundation (NFXF) – Clinic Finder
Tool to locate Fragile X clinics (FXS / FXTAS / international). Filters by location, service, age, etc.
https://fragilex.org/resources/clinics/
Fragile X Clinics – FRAXA
Interactive map of medical facilities and clinics for Fragile X, helping families find care near them.
https://www.fraxa.org/fragile-x-clinics/
Prader-Willi Syndrome (PWS)
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Woods Services – Prader-Willi Syndrome Program
Provides residential, day, and community-based therapy services, including behavioral, physical, occupational, and speech therapy, tailored to children with Prader-Willi Syndrome in Pennsylvania, including Montgomery County.
Phone: 215-750-4000
https://woodsservicespa.org/prader-willi/
Community Coordinated Care (CCTC) – Montgomery County Services
Provides early intervention therapies, including physical, occupational, and speech therapy, tailored to children with developmental disabilities such as Prader-Willi Syndrome in Montgomery County.
Phone: 610-277-6363
https://www.cctckids.org/programs-services/in-montgomery-county/
Children’s Hospital of Philadelphia (CHOP) – Diagnostic and Research Growth Center
CHOP offers a dedicated Diagnostic and Research Growth Center providing multidisciplinary care, including endocrinology, nutrition, behavioral therapy, and clinical research for children with Prader-Willi Syndrome.
Phone: 215-590-8300
https://www.research.chop.edu/diagnostic-and-research-growth-center
Elwyn – Early Intervention and Therapy Services
Provides early intervention, physical, occupational, and speech therapy services for children with developmental disabilities in Pennsylvania, including Montgomery County.
Phone: 610-891-2000
https://www.elwyn.org/services/early-intervention/
Main Line Pediatric Therapy Center
Provides pediatric therapy services, including physical, occupational, and speech therapy, for children with developmental disabilities such as Prader-Willi Syndrome in Montgomery County and surrounding areas.
Phone: 610-527-7714
Prader-Willi Syndrome Association USA (PWSA USA)
Offers resources, family support, education, and advocacy for families affected by Prader Willi Syndrome. Provides connections to local support networks, including Pennsylvania chapters.
Phone: 941-312-0400
https://www.pwsausa.org/resources/
Foundation for Prader-Willi Research (FPWR)
Provides extensive resources, family support groups, and advocacy for Prader-Willi Syndrome worldwide, including guidance for Pennsylvania families.
Phone: 818-347-4674
https://www.fpwr.org/prader-willi-syndrome-resources
PWSA (Prader-Willi Syndrome Association) – Pennsylvania Chapter
Provides peer support, education, and advocacy for families affected by Prader-Willi Syndrome throughout Pennsylvania, including Montgomery County. Hosts meetings, social events, and shares resources.
https://www.pwsausa.org/join-now/chapters/pennsylvania/
The Arc of Montgomery County
Provides advocacy, family support, and community programs for individuals with intellectual and developmental disabilities, including Prader-Willi Syndrome, in Montgomery County.
Phone: 215-646-3510
https://www.arcofmontcopa.org/
Montgomery County How to Access Developmental Disability Services
Step-by-step guide to help families navigate and access services for developmental disabilities, including Prader-Willi Syndrome, in Montgomery County.
https://www.montgomerycountypa.gov/1332/How-to-Access-Developmental-Disability-S
Pennsylvania Department of Human Services – Early Intervention Services
Provides early intervention services, including therapy and developmental support, for children with developmental disabilities in Pennsylvania, including Montgomery County.
https://www.pa.gov/agencies/dhs/resources/early-learning-child-care/early-intervention services
Pennsylvania Department of Human Services – Office of Developmental Programs (ODP)
Oversees funding, service coordination, and advocacy for people with developmental disabilities across Pennsylvania, including Montgomery County.
Phone: 717-787-2700
Family Support of Southeastern Pennsylvania (FSSP)
Provides support, information, and advocacy services for families of children with disabilities, including Prader-Willi Syndrome, in Montgomery County and surrounding areas.
Phone: 610-447-0350
National Institute of Child Health and Human Development (NICHD) – Prader-Willi Syndrome Resources
Provides evidence-based health information, research updates, and resources for families and professionals working with individuals affected by Prader-Willi Syndrome.
https://www.nichd.nih.gov/health/topics/prader-willi/more_information/resources
Williams Syndrome
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Children’s Hospital of Philadelphia (CHOP) – Williams Syndrome Clinic
CHOP offers a dedicated Williams Syndrome Clinic providing comprehensive care, including cardiology, endocrinology, developmental pediatrics, and therapy services tailored to children with Williams Syndrome.
Phone: 215-590-8300
https://www.chop.edu/centers-programs/williams-syndrome-clinic
University of Pennsylvania (Penn Medicine) – Williams Syndrome Program
Provides comprehensive evaluation, diagnosis, and multidisciplinary care, including cardiology, genetics, and developmental therapy services tailored to children with Williams Syndrome.
Phone: 215-662-4000
https://www.med.upenn.edu/williams-syndrome/
Stanford Medicine Children’s Health – Connective Tissue Disorders Program
Provides multidisciplinary care for children with Williams Syndrome, including cardiology, genetics, and developmental therapy services. Serves patients from Pennsylvania, including Montgomery County.
Phone: 650-723-5941
https://treat.stanfordchildrens.org/connective-tissue-disorders/
Main Line Pediatric Therapy Center
Provides pediatric therapy services, including physical, occupational, and speech therapy, for children with developmental disabilities such as Williams Syndrome in Montgomery County and surrounding areas.
Phone: 610-527-7714
Easterseals Eastern Pennsylvania
Offers therapy and early intervention services for children with developmental disabilities including Williams Syndrome in Montgomery County and surrounding areas.
Phone: 610-437-5411
https://www.easterseals.com/epenn/
Elwyn – Early Intervention and Therapy Services
Provides early intervention, physical, occupational, and speech therapy services for children with developmental disabilities in Pennsylvania, including Montgomery County.
Phone: 610-891-2000
https://www.elwyn.org/services/early-intervention/
Community Coordinated Care (CCTC) – Montgomery County Services
Provides early intervention therapies, including physical, occupational, and speech therapy, tailored to children with developmental disabilities such as Williams Syndrome in Montgomery County.
Phone: 610-277-6363
https://www.cctckids.org/programs-services/in-montgomery-county/
Speech and Language Development Center (SLDC) – Philadelphia
Specializes in speech and language therapy for children with developmental disabilities, including Williams Syndrome, in Philadelphia and surrounding areas.
Phone: 215-248-1700
Williams Syndrome Association (WSA) – Tri-State Chapter
Provides peer support, education, and advocacy for families affected by Williams Syndrome in Pennsylvania, New Jersey, and Delaware, including Montgomery County. Hosts meetings, social events, and shares resources.
https://www.williams-syndrome.org/region/tri-state
Williams Syndrome Association – Available Aid and Assistance
Offers resources, family support, education, and advocacy for families affected by Williams Syndrome. Provides connections to local support networks, including Pennsylvania chapters.
https://www.williams-syndrome.org/available-aid-and-assistance
Montgomery County How to Access Developmental Disability Services
Step-by-step guide to help families navigate and access services for developmental disabilities, including Williams Syndrome, in Montgomery County.
https://www.montgomerycountypa.gov/1332/How-to-Access-Developmental-Disability-S
Montgomery County Early Intervention Services
Provides early intervention services, including therapy and developmental support, for children with developmental disabilities in Montgomery County.
https://www.montgomerycountypa.gov/745/Early-Intervention
Pennsylvania Early Intervention Providers
Provides early intervention services, including therapy and developmental support, for children with developmental disabilities in Pennsylvania, including Montgomery County.
Delaware County Memorial Hospital (DCMH) – Community Resources
Provides information and referrals to community resources, including developmental disability services, for families in Delaware County and surrounding areas, including Montgomery County.
Phone: 610-359-2200
https://decmc.org/community-resources/
The Arc of Montgomery County
Provides advocacy, family support, and community programs for individuals with intellectual and developmental disabilities, including Williams Syndrome, in Montgomery County.
Phone: 215-646-3510
Autism Spectrum Disorder (ASD)
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Cerebral Palsy with Intellectual Impairment
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Fetal Alcohol Spectrum Disorders (FASD); Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure
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Angelman Syndrome
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ASF Clinic at Children’s Hospital of Philadelphia (CHOP)
Appointments and contact information for CHOP’s Angelman Syndrome Foundation Clinic.
https://angelman.org/asf-clinics/childrens-hospital-of-philadelphia/
CHOP Specialty Care & Surgery Center, Bucks County (Chalfont)
Local access point for families in Bucks County to connect with CHOP’s Angelman services.
https://www.chop.edu/locations/specialty-care-surgery-center-bucks-county
Angelman Syndrome Foundation (ASF) – Resources Hub
Provides comprehensive resources, educational materials, research updates, and community support.
https://angelman.org/resources/
ASF Clinic Network
National and international listing of ASF-affiliated clinics specializing in Angelman Syndrome care.
https://angelman.org/asf-clinics/
Foundation for Angelman Syndrome Therapeutics (FAST)
Main organization funding research and treatments for Angelman Syndrome.
Main Site:
https://cureangelman.org/
Caregiver Resources:
https://cureangelman.org/resources/
ASF Adult and Transition Resources
Guidance for families supporting adolescents and adults with Angelman Syndrome, covering transitions to adulthood and long-term planning.
https://angelman.org/asgrowsup/
Stepping Into AAC – ASF / PrAACtical AAC Toolkit
A 20-week toolkit for families to support communication through augmentative and alternative communication (AAC).
PrAACtical AAC Page:
https://praacticalaac.org/stepping-into-aac-home/
ASF Page:
https://angelman.org/resources/stepping-into-aac/
FAST – Speech Therapy and AAC Overview
Educational resources for families on speech therapy and AAC specific to Angelman Syndrome.
https://cureangelman.org/speech-therapy-angelman-syndrome
Geisinger Dup15q and Angelman Syndrome Clinic
Provides comprehensive evaluations, therapy, and support services for individuals with Angelman Syndrome and Dup15q syndrome in Pennsylvania, including Montgomery County.
Phone: 570-214-6550
https://www.geisingerdevmed.org/dup15q-angelman-clinic
Ambler Counseling – Full Battery Evaluation
Offers psychological and developmental evaluations for children with Angelman Syndrome in Montgomery County and surrounding areas.
Phone: 267-282-8470
https://amblercounseling.com/full-battery-evaluation
Dragonfly Psychology – Child Assessment
Provides comprehensive psychological and developmental assessments for children with Angelman Syndrome in Pennsylvania.
Phone: 267-649-3047
https://dragonflypsych.com/clinical-services/services-for-children/child-assessment/
Psychology Today – Montgomery County Therapists for Testing and Evaluation
Lists local therapists and psychologists in Montgomery County who specialize in testing and evaluation for children with developmental disabilities, including Angelman Syndrome.
https://www.psychologytoday.com/us/therapists/pa/montgomery-county?category=testing-and-evaluation
My Child’s Therapy – Early Intervention
Offers early intervention services, including evaluations and therapy for children with Angelman Syndrome in Montgomery County and surrounding areas.
Phone: 215-620-3292
https://www.mychildstherapy.com/early-intervention-montgomery-county
Gentle Care Therapy – Early Intervention PA
Provides early intervention services, including evaluations and therapy for children with Angelman Syndrome in Pennsylvania.
Phone: 610-868-3400
https://gentlecaretherapy.com/early-intervention-pa/
Montgomery County Intermediate Unit (MCIU) – Early Intervention
Offers early intervention evaluations and therapy services for children with developmental delays, including Angelman Syndrome, in Montgomery County.
Phone: 610-630-4100
https://mciu.org/office-of-early-childhood-services/early-intervention/
Bellelite Health – Montgomery County
Provides pediatric therapy services, including physical therapy, occupational therapy, and speech therapy, for children with Angelman Syndrome in Montgomery County and surrounding areas.
Phone: 215-657-1440
https://www.bellelitehealth.com/montgomery-county
Children’s Hospital of Philadelphia (CHOP)
Offers comprehensive evaluations, therapy, and support services for children with Angelman Syndrome in the Philadelphia region.
Phone: 215-590-1666
https://www.chop.edu/
Main Line Pediatric Therapy
Provides speech therapy, occupational therapy, physical therapy, and early intervention services for children with Angelman Syndrome in Montgomery County and surrounding areas.
Phone: 610-527-7714
https://www.mainlinepediatrictherapy.com/
Elwyn – Early Intervention and Therapy Services
Offers early intervention evaluations, physical therapy, occupational therapy, and speech therapy for children with developmental delays, including Angelman Syndrome, in Pennsylvania, including Montgomery County.
Phone: 610-891-2000
https://www.elwyn.org/services/early-intervention/
Speech and Language Development Center (SLDC)
Specializes in speech and language therapy for children with Angelman Syndrome in Philadelphia and surrounding areas.
Phone: 215-248-1700
https://www.sldc.org/
TherapyWorks
Provides speech therapy, occupational therapy, physical therapy, and ABA therapy for children with Angelman Syndrome in Montgomery County and surrounding areas via in-person and telehealth services.
Phone: 877-778-6442
https://www.therapy-works.com/
Stars Behavioral Health Group (SBHG)
Offers behavioral therapy, evaluations, and support services for individuals with Angelman Syndrome in the Philadelphia area.
Phone: 215-515-1677
https://www.starsbehavioralhealthgroup.com/
The Center for Autism and Developmental Disabilities (CADD) – Virtua Health
Provides comprehensive therapy services, including speech therapy, occupational therapy, and physical therapy, for children with Angelman Syndrome in southern New Jersey and the Philadelphia region.
Phone: 856-247-8255
https://www.virtua.org/services/cadd
Achieva
Provides physical therapy, occupational therapy, speech therapy, and support services for individuals with Angelman Syndrome in Pennsylvania.
Phone: 412-995-5000
https://www.achievaonline.org/
Bancroft NeuroRehab – Pediatric Services
Offers physical therapy, occupational therapy, speech therapy, and specialized rehabilitation services for children with Angelman Syndrome in New Jersey and the Philadelphia area.
Phone: 844-236-2267
https://www.bancroft.org/neuro-rehab/pediatric-neuro-rehab/
The Therapy Group of Philadelphia
Provides physical therapy, occupational therapy, speech therapy, and early intervention services for children with Angelman Syndrome in the Philadelphia area.
Phone: 215-563-2000
https://www.therapygroupphilly.com/
Cerebral Palsy Association of Delaware Valley (CPADV)
Offers physical therapy, occupational therapy, speech therapy, and support services for individuals with Angelman Syndrome in the Philadelphia area.
Phone: 215-545-2184
https://www.cpadelval.org/
Community Health and Dental Care (CHDC) – Pediatric Services
Provides developmental screenings, therapy, and support services for children with Angelman Syndrome in Philadelphia and Montgomery County.
Phone: 215-238-5100
https://www.chdc.org/
Jewish Family and Children’s Service of Greater Philadelphia – Developmental Support
Offers therapy, counseling, and support services for children with Angelman Syndrome and their families in the Philadelphia area.
Phone: 215-576-0800
https://www.jfcspgh.org/developmental-support/
NeuroBehavioral Associates
Provides neuropsychological evaluations, therapy, and support services for individuals with Angelman Syndrome in the Philadelphia area.
Phone: 301-986-1900
https://www.neurobehavioral.com/
Abington Pediatric Therapy
Offers occupational therapy, physical therapy, speech therapy, and early intervention services for children with Angelman Syndrome in Montgomery County and surrounding areas.
Phone: 215-887-4500
https://www.abingtonhealth.org/pediatric-therapy
Children’s Integrated Center for Success (CICS)
Provides comprehensive evaluations, therapy, and support services for children with Angelman Syndrome in the Philadelphia area.
Phone: 215-707-0300
https://www.templehealth.org/locations/childrens-integrated-center-for-success
Devereux Advanced Behavioral Health Pennsylvania
Offers behavioral therapy, evaluations, and support services for individuals with Angelman Syndrome in the Philadelphia area.
Phone: 610-954-9600
https://www.devereux.org/site/SPageServer/?pagename=pa_adult_services
22q11.2 Deletion Syndrome (DiGeorge Syndrome / VCFS)
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CHOP 22q and You Center
A nationally recognized clinic at CHOP that provides comprehensive multidisciplinary care for children with 22q11.2 Deletion Syndrome.
https://www.chop.edu/centers-programs/22q-and-you-center
CHOP Patient Information – 22q11.2 Deletion & Duplication Syndromes
Educational overview and care information for families.
https://www.chop.edu/conditions-diseases/22q112-deletion-and-duplication-syndromes
CHOP Specialty Care & Surgery Center, Bucks County (Chalfont)
Local access point for families in Bucks County to connect with CHOP’s 22q services.
https://www.chop.edu/locations/specialty-care-surgery-center-bucks-county
International 22q11.2 Foundation
Provides family resources, educational materials, and advocacy for those affected by 22q.
Main Site:
https://22q.org/
Resources for Families:
https://22q.org/resources/for-families/
22q Family Foundation
Supports families with education, peer groups, FAQs, and connection opportunities.
https://22qfamilyfoundation.org/
Geisinger Dup15q and Angelman Syndrome Clinic
Provides comprehensive evaluations, therapy, and support services for individuals with 22q11.2 Deletion Syndrome and related conditions in Pennsylvania, including Montgomery County.
Phone: 570-214-6550
https://www.geisingerdevmed.org/dup15q-angelman-clinic
Ambler Counseling – Full Battery Evaluation
Offers psychological and developmental evaluations for children with 22q11.2 Deletion Syndrome in Montgomery County and surrounding areas.
Phone: 267-282-8470
https://amblercounseling.com/full-battery-evaluation
Dragonfly Psychology – Child Assessment
Provides comprehensive psychological and developmental assessments for children with 22q11.2 Deletion Syndrome in Pennsylvania.
Phone: 267-649-3047
https://dragonflypsych.com/clinical-services/services-for-children/child-assessment/
Psychology Today – Montgomery County Therapists for Testing and Evaluation
Lists local therapists and psychologists in Montgomery County who specialize in testing and evaluation for children with developmental disabilities, including 22q11.2 Deletion Syndrome.
https://www.psychologytoday.com/us/therapists/pa/montgomery-county?category=testing-and-evaluation
My Child’s Therapy – Early Intervention
Offers early intervention services, including evaluations and therapy for children with 22q11.2 Deletion Syndrome in Montgomery County and surrounding areas.
Phone: 215-620-3292
https://www.mychildstherapy.com/early-intervention-montgomery-county
Gentle Care Therapy – Early Intervention PA
Provides early intervention services, including evaluations and therapy for children with 22q11.2 Deletion Syndrome in Pennsylvania.
Phone: 610-868-3400
https://gentlecaretherapy.com/early-intervention-pa/
Montgomery County Intermediate Unit (MCIU) – Early Intervention
Offers early intervention evaluations and therapy services for children with developmental delays, including 22q11.2 Deletion Syndrome, in Montgomery County.
Phone: 610-630-4100
https://mciu.org/office-of-early-childhood-services/early-intervention/
Bellelite Health – Montgomery County
Provides pediatric therapy services, including physical therapy, occupational therapy, and speech therapy, for children with 22q11.2 Deletion Syndrome in Montgomery County and surrounding areas.
Phone: 215-657-1440
https://www.bellelitehealth.com/montgomery-county
Children’s Hospital of Philadelphia (CHOP) – 22q and You Center
Offers comprehensive evaluations, therapy, and support services specifically for 22q11.2 Deletion Syndrome in the Philadelphia region.
Phone: 215-590-1666
https://www.chop.edu/centers-programs/22q-and-you-center
Main Line Pediatric Therapy
Provides speech therapy, occupational therapy, physical therapy, and early intervention services for children with 22q11.2 Deletion Syndrome in Montgomery County and surrounding areas.
Phone: 610-527-7714
https://www.mainlinepediatrictherapy.com/
Elwyn – Early Intervention and Therapy Services
Offers early intervention evaluations, physical therapy, occupational therapy, and speech therapy for children with 22q11.2 Deletion Syndrome in Pennsylvania, including Montgomery County.
Phone: 610-891-2000
https://www.elwyn.org/services/early-intervention/
Speech and Language Development Center (SLDC)
Specializes in speech and language therapy for children with 22q11.2 Deletion Syndrome in Philadelphia and surrounding areas.
Phone: 215-248-1700
https://www.sldc.org/
TherapyWorks
Provides speech therapy, occupational therapy, physical therapy, and ABA therapy for children with 22q11.2 Deletion Syndrome in Montgomery County and surrounding areas via in-person and telehealth services.
Phone: 877-778-6442
https://www.therapy-works.com/
Stars Behavioral Health Group (SBHG)
Offers behavioral therapy, evaluations, and support services for individuals with 22q11.2 Deletion Syndrome in the Philadelphia area.
Phone: 215-515-1677
https://www.starsbehavioralhealthgroup.com/
The Center for Autism and Developmental Disabilities (CADD) – Virtua Health
Provides comprehensive therapy services, including speech therapy, occupational therapy, and physical therapy, for children with 22q11.2 Deletion Syndrome in southern New Jersey and the Philadelphia region.
Phone: 856-247-8255
https://www.virtua.org/services/cadd
Achieva
Provides physical therapy, occupational therapy, speech therapy, and support services for individuals with 22q11.2 Deletion Syndrome in Pennsylvania.
Phone: 412-995-5000
https://www.achievaonline.org/
Bancroft NeuroRehab – Pediatric Services
Offers physical therapy, occupational therapy, speech therapy, and specialized rehabilitation services for children with 22q11.2 Deletion Syndrome in New Jersey and the Philadelphia area.
Phone: 844-236-2267
https://www.bancroft.org/neuro-rehab/pediatric-neuro-rehab/
The Therapy Group of Philadelphia
Provides physical therapy, occupational therapy, speech therapy, and early intervention services for children with 22q11.2 Deletion Syndrome in the Philadelphia area.
Phone: 215-563-2000
https://www.therapygroupphilly.com/
Community Health and Dental Care (CHDC) – Pediatric Services
Provides developmental screenings, therapy, and support services for children with 22q11.2 Deletion Syndrome in Philadelphia and Montgomery County.
Phone: 215-238-5100
https://www.chdc.org/
Jewish Family and Children’s Service of Greater Philadelphia – Developmental Support
Offers therapy, counseling, and support services for children with 22q11.2 Deletion Syndrome and their families in the Philadelphia area.
Phone: 215-576-0800
https://www.jfcspgh.org/developmental-support/
NeuroBehavioral Associates
Provides neuropsychological evaluations, therapy, and support services for individuals with 22q11.2 Deletion Syndrome in the Philadelphia area.
Phone: 301-986-1900
https://www.neurobehavioral.com/
Abington Pediatric Therapy
Offers occupational therapy, physical therapy, speech therapy, and early intervention services for children with 22q11.2 Deletion Syndrome in Montgomery County and surrounding areas.
Phone: 215-887-4500
https://www.abingtonhealth.org/pediatric-therapy
Children’s Integrated Center for Success (CICS)
Provides comprehensive evaluations, therapy, and support services for children with 22q11.2 Deletion Syndrome in the Philadelphia area.
Phone: 215-707-0300
https://www.templehealth.org/locations/childrens-integrated-center-for-success
Devereux Advanced Behavioral Health Pennsylvania
Offers behavioral therapy, evaluations, and support services for individuals with 22q11.2 Deletion Syndrome in the Philadelphia area.
Phone: 610-954-9600
https://www.devereux.org/site/SPageServer/?pagename=pa_adult_services
Tuberous Sclerosis Complex (TSC)
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Mental Health, Developmental Disability and Family Support Organizations
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Bucks County Intermediate Unit #22
Provides educational, special education, early intervention, and student support services to children and families throughout Bucks County. Offers parent resources, transition services, autism support, behavioral health coordination, and educational programming for students with diverse learning needs.
Address: 705 N. Shady Retreat Road, Doylestown, PA 18901
Phone: (215) 348-2940
Contact Email: communications@bucksiu.org
Website: Bucks County IU
A Woman’s Place
The only domestic violence organization serving Bucks County. Provides free and confidential counseling, legal advocacy, emergency shelter, prevention education, support groups, and crisis intervention services for victims of domestic violence and their children.
Address: 1281 Almshouse Road, Doylestown, PA 18901
Phone: (215) 343-9241 | 24-Hour Hotline: 1-800-220-8116
Contact Email: info@awomansplace.org
Website: A Woman’s Place
Bucks County Human Services Department (The Hub)
A centralized “one-stop” access point connecting Bucks County residents to mental health, developmental, housing, food, employment, veteran, and family support services. The Hub assists individuals and families in navigating county human service systems and community resources.
Address: 55 E. Court Street, Doylestown, PA 18901
Phone: (215) 348-6201
Contact Email: thehub@buckscounty.org
Website: Bucks Human Services Connect Hub
Sequel Youth and Family Services
Provides behavioral health treatment, residential services, education support, and community-based programs for children, adolescents, and families with emotional, behavioral, and mental health challenges. Services often include therapeutic foster care, residential treatment, and family-based support programs.
Address: Multiple Pennsylvania locations
Phone: (717) 972-8400
Contact Email: info@sequel-inc.com
Website: Sequel Youth and Family Services
Bucks County Health Improvement Partnership (BCHIP)
A nonprofit collaborative organization focused on improving community health outcomes in Bucks County through partnerships, wellness initiatives, prevention programs, smoking cessation support, recovery services, and public health education.
Address: 41 University Drive, Suite 101, Newtown, PA 18940
Phone: (267) 291-7882
Contact Email: info@bchip.org
Website: BCHIP
PA Navigate
A statewide online platform that helps families, caregivers, and professionals locate health, behavioral health, educational, disability, and community support services across Pennsylvania. Includes searchable resource databases and referral assistance.
Address: Statewide Pennsylvania resource network
Phone: 2-1-1 Pennsylvania HelpLine
Contact Email: support@pa-navigate.org
Website: PA Navigate
Bucks County Opportunity Council
The leading anti-poverty nonprofit organization in Bucks County. Provides housing assistance, food programs, utility assistance, weatherization, financial coaching, employment support, and family self-sufficiency programs.
Address: 100 Doyle Street, Doylestown, PA 18901
Phone: (215) 345-8175
Contact Email: info@bcoc.org
Website: Bucks County Opportunity Council
Parent to Parent of Pennsylvania
Provides peer mentoring and emotional support for families of children and adults with disabilities or special healthcare needs. Connects parents with trained volunteer mentor families who have similar life experiences.
Address: 6340 Flank Drive, Harrisburg, PA 17112
Phone: (888) 727-2706
Contact Email: parenttoparent@visionforequality.org
Website: Parent to Parent of PA
Magellan Behavioral Health of Pennsylvania
Manages behavioral health services for Health Choices members in Bucks County. Provides access to mental health and substance use treatment providers, crisis services, care coordination, and community support resources.
Address: 105 Terry Drive, Suite 103, Newtown, PA 18940
Phone: (877) 769-9782
Contact Email: memberhelp@magellanhealth.com
Website: Magellan Behavioral Health of PA
Child & Family Focus, Inc.
Provides behavioral health, psychiatric, autism, family-based, and substance use treatment services for children, adolescents, and families. Offers outpatient therapy, peer support, school-based programs, and community mental health services.
Address: 2935 Byberry Road, Hatboro, PA 19040
Phone: (215) 957-9771
Contact Email: info@childandfamilyfocus.org
Website: Child & Family Focus
Family Service Association of Bucks County
Provides counseling, family support, parenting education, homeless services, senior programs, victim assistance, and mental health support services throughout Bucks County. Programs support children, adults, and families facing emotional, financial, and social challenges.
Address: 4 Cornerstone Drive, Langhorne, PA 19047
Phone: (215) 757-6916
Contact Email: info@fsabc.org
Website: www.fsabc.org
Montgomery County (under construction)
Down Syndrome (Trisomy 21)
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Resources:
Rett Syndrome
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Resources:
Fragile X Syndrome
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Resources:
Quick Links
Down Syndrome (Trisomy 21)
Click to Learn More
Resources:
Bucks County Down Syndrome Interest Group (BCDSIG)
Local support group for families — peer support, events, resource & info sharing.
Phone: (215) 290-3118
Website: https://bcdsig.wordpress.comNational Down Syndrome Society (NDSS)
Information, advocacy, local support groups, guides for early intervention, and educational & healthcare resources.
https://ndss.org/National Institute of Child Health and Human Development (NICHD)
Research, health info, resource links for patients and families.
https://www.nichd.nih.gov/health/topics/downsyndromeMayo Clinic
Overviews of diagnosis & treatment. Helps with guidance on what to expect medically.
https://www.mayoclinic.org/diseases-conditions/down-syndromeChildren’s Hospital of Philadelphia (CHOP)
“Trisomy 21 Toolkit for Transitioning to Adult Medical Care” and broader resources.
https://www.chop.edu/caring-for-your-childDown Syndrome Diagnosis Network (DSDN)
National parent network that provides peer support, family connections, and advocacy.
https://www.dsdiagnosisnetwork.org/
Rett Syndrome
Click to Learn More
Resources:
The Medical Center at Woods (Bucks County)
Outpatient care specializes in people with disabilities.
Offers high-quality, compassionate outpatient services for a wide range of illnesses and injuries, including chronic disease management, acute care, women’s health, men’s health, vaccinations, blood work, X-rays, etc.
Focus on treating people with intellectual and developmental disabilities, autism, behavioral challenges, and those with medical complexities.
Staff trained to work with special needs patients, including nonverbal communication, sensory accommodations, and other supports.
Provides medical, dental, and behavioral health care specialized for this population.
Website: https://www.woods.org/
Bucks County Department of Behavioral Health / Developmental Programs (BH/DP)
Administers behavioral health, developmental, intellectual disability, autism, and mental health services for Bucks County residents.
Developmental Programs include Early Intervention, Intellectual Disabilities / Autism (ID/A) services.
Supports Coordination helps with finding, coordinating, and monitoring services.
Services range from companion care to 24-hour residential support, based on assessed need.
Also covers mental health services, managed care, crisis services, peer support, and case management.
Website: https://www.buckscounty.gov/601/Behavioral-Health-Developmental-Programs
Bucks County Intellectual Disabilities / Autism (ID/A) Services
Administered locally by Bucks County BH/DP under the Pennsylvania Office of Developmental Programs (ODP).
Eligibility includes intellectual disability, autism spectrum disorder, developmental disability (for children age 8 or younger), or children with medical complexities up to age 21.
Offers Supports Coordination to help individuals locate, coordinate, and monitor needed services.
Services are varied based on assessed needs: companion care, residential supports, etc.
Website: https://www.buckscounty.gov/643/Intellectual-DisabilitiesAutism-Servic
Children’s Hospital of Philadelphia (CHOP) – Rett Syndrome Clinic
Provides multidisciplinary clinical care for children with Rett syndrome or related conditions (e.g., FOXG1 syndrome, MECP2 duplication).
Services include:
• Diagnosis/genetic testing (if not yet established).
• Management of medical issues (seizures, nutrition, gastrointestinal, growth, tone/spasticity, sleep disturbances).
• Therapies: physical, occupational, speech (including augmentative/alternative communication).
• Rehabilitation and equipment needs (seating, mobility).
• Social work collaboration for resources and family support.Involved in research: Natural History of Rett Syndrome and Related Disorders study; observational and interventional trials; biomarker development; wearable technologies.
Links:
Clinic page: https://www.chop.edu/centers-programs/rett-syndrome-clinic
Preparing for your appointment: https://www.chop.edu/pages/preparing-your-rett-syndrome-clinic-appointment
Fragile X Syndrome
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Resources:
Children’s Hospital of Philadelphia (CHOP) Fragile X / Trinucleotide Repeats Clinic
CHOP’s Neuroscience Center includes a clinic for “Trinucleotide Repeats: Fragile X Syndrome.”
Provides evaluation, management, and treatment of children and adolescents with Fragile X Syndrome and related genetic disorders.
A developmental pediatrician, Amanda E. Bennett, MD, MPH, specializes in Fragile X syndrome and provides care for children from birth through age 18.
Services include medical evaluation, developmental assessment, and family support.
CHOP is a member of the Fragile X Clinical & Research Consortium (FXCRC), giving families access to research and guidance for transitioning to adult care.
Links:
CHOP Fragile X info: https://www.chop.edu/conditions-diseases/trinucleotide-repeats-fragile-x-syndrome
Amanda E. Bennett profile: https://www.chop.edu/doctors/bennett-amanda-e
Geisinger Fragile X Clinic — Autism & Developmental Medicine Institute (ADMI)
Offers a comprehensive package of developmental services for individuals with Fragile X and family support.
Multidisciplinary: medical, behavioral, genetic counseling, assessment services, speech-language pathology, psychology, special education, etc.
Leads or participates in genetic testing and is part of the Fragile X Clinical & Research Consortium.
Provides consultation to schools, agencies, and families both locally and at a distance.
Links:
Fragile X Clinic page: https://www.geisingerdevmed.org/fragile-x-clinic
ADMI Referral/Services: https://www.geisingerdevmed.org/refer-to-devmed
Elwyn – Training & Research / Related Services
Large nonprofit organization based in Pennsylvania, offering a broad continuum of services for people with intellectual, developmental, and behavioral health needs.
Key Services:
Early Learning Services (ELS) – Preschool early intervention services for children ages 3 up to school-age. Includes developmental evaluation, intake, individualized education planning, case management.
Educational Services – Customized educational programs in partnership with school districts and charter schools, supporting students to reach maximum potential.
Intellectual and Developmental Disabilities Services – Support for children and adults with a variety of developmental disabilities.
Behavioral Health Services (Children’s & Adult) – Mental/behavioral health supports across ages.
Crisis Services – For urgent intervention.
Links:
Main website: https://www.elwyn.org/
Early Learning Services: https://www.elwyn.org/services/early-learning-services
Educational Services: https://www.elwyn.org/services/educational-services
National Fragile X Foundation (NFXF) – Clinic Finder
Tool to locate Fragile X clinics (FXS / FXTAS / international). Filters by location, service, age, etc.
https://fragilex.org/resources/clinics/
Fragile X Clinics – FRAXA
Interactive map of medical facilities and clinics for Fragile X, helping families find care near them.
https://www.fraxa.org/fragile-x-clinics/
Prader-Willi Syndrome (PWS)
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Resources:
Shriners Children’s Philadelphia – Doylestown Clinic
The Doylestown clinic lists Prader-Willi Syndrome among conditions treated.
Main specialty is pediatric orthopedics and sports injuries, but inclusion of PWS suggests referral or multidisciplinary support for related issues such as orthopedic health or mobility.
Website: https://www.shrinerschildrens.org/en/locations/philadelphia
CHOP – Diagnostic and Research Growth Center
Program and research registry for patients with Prader-Willi Syndrome.
Supports medical research, genetic studies, longitudinal tracking of growth hormone effects, respiratory status, and more.
Good resource for both clinical research and connections to care.
Website: https://www.chop.edu/
Prader-Willi Syndrome Association (PWSA) USA
National listing of clinics for PWS and related rare diseases.
Directory includes healthcare providers in endocrinology, nutrition, genetics, and other specialties.
Helps families find the nearest comprehensive PWS clinic (including out-of-state).
Website: https://www.pwsausa.org/
Prader-Willi Syndrome Association of Pennsylvania
Offers support, education, advocacy, and connections with families and professionals in Pennsylvania.
Helps with referrals, peer support, and community resources.
Website: https://www.pafamiliesinc.org/
Bucks County Support Groups Directory (PDF)
Contains listings of local support groups, including Prader-Willi Syndrome.
Helpful for peer/family connections.
(Best accessed via Bucks County government support group documentation.)
Williams Syndrome
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Resources:
Williams Syndrome Association (WSA)
Provides family support, local support networks/groups, events, educational resources, medical guidelines, and connections with other families.
“Local Connections / Family Support Network” helps families locate volunteers and other families nearby.
Links:
Main site: https://www.williams-syndrome.org/
Resources: https://www.williams-syndrome.org/resources
Penn Medicine / CHOP – ACE-WS Resources Page
ACE-WS program includes behavioral and mental health resources, early intervention, assistive technology, dental care, anesthesia, puberty/transition, guardianship, and more.
Comprehensive set of resources useful for Williams Syndrome care.
Autism Spectrum Disorder (ASD)
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Resources:
Bucks County Intellectual Disabilities / Autism Services (ID/A) – Department of Behavioral Health & Developmental Programs (BH/DP)
Provides services via the PA Office of Developmental Programs (ODP) for individuals with diagnoses including Intellectual Disability, Autism Spectrum Disorder, Developmental Disability (young children), and Children with Medical Complexities.
Helps with supports coordination, eligibility/intake, connecting with service providers, and monitoring services.
Contact: Bucks County Admin Building, 55 East Court Street, Doylestown PA.
Phone: (215) 348-6000 | Toll free: 1-888-942-8257
Website: https://www.buckscounty.gov/643/Intellectual-DisabilitiesAutism-Servic
Bucks County LIFE (Living In Family Environments)
Free program for families with children up to age 26.
Offers family support specialists, peer specialists, help navigating services, referrals, trainings, and resource events.
No diagnosis or insurance required.
Location: 159 East County Line Road, Suite 280, Warminster, PA.
Phone: 888-442-1590 (opt. 1)
Website: https://www.accessservices.org/services/buckslife/
Access Services – Intellectual Disability & Autism Programs
Provides a wide set of services for people with ID & Autism.
Services include behavioral supports and assessments, day programs, employment services, in-home supports, respite care, and more.
Website: https://www.accessservices.org/
SEQUEL – Bucks IU (Adult Programs & Services)
Provides support for adults with disabilities, including autism.
Services include leisure, volunteer, and employment opportunities, community participation, and supported employment.
Offers person-centered programming.
Contact: Bucks IU | Phone: 215-348-2940 ext. 7061 | Email: SEQUEL@BucksIU.org
Website: https://www.bucksiu.org/programs-services/adult-programs/sequel
Bucks County Center for Independent Living (BCCIL)
Offers independent living skills, peer mentoring/support, information & referral, advocacy, transition services, etc.
Especially useful for older teens or adults with disabilities including autism or intellectual impairment.
Location: 164 Lincoln Hwy, Suite 101, Fairless Hills, PA 19030.
Phone: 215-781-5070
Website: https://paautism.org/
Pennsylvania Statewide / Additional Resources
PA DHS – Autism Services and Waiver Programs
Information about Autism Services under Pennsylvania DHS.
Includes Adult Autism Waiver (AAW), Community Living Waiver, Consolidated Waiver, Person/Family Directed Support (PFDS) Waiver.
Information on Adult Community Autism Program (ACAP) in select counties.
Overseen by the Bureau of Supports for Autism and Special Populations.
Website: https://www.dhs.pa.gov/Services/Disabilities-Aging/Pages/Autism-Services.aspx
PA’s Autism Services, Education, Resources & Training (ASERT)
Statewide resource center for autism.
Provides information, trainings, events, resources for families, self-advocates, and providers.
Features a searchable database of local/regional services, support groups, events, and eLearning courses.
Toll-free Resource Center: 877-231-4244 | Email: info@PAautism.org
Website: https://paautism.org/
Cerebral Palsy with Intellectual Impairment
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Resources:
Pediatric Therapy Center of Bucks County, LLC
Provides physical therapy, occupational therapy, and speech therapy for children ages 0–18.
Treats issues like hypotonia, gait, orthotics, communication delays, and functional skills.
Website: https://buckscountypeds.com/
The Medical Center at Woods
Offers outpatient primary medical, dental, and behavioral care for children and adults with developmental disabilities, including CP.
Staff and facilities are designed to be special-needs friendly.
Provides personalized and coordinated care for people with medical complexities.
Website: https://www.woods.org/
Bucks Developmental Pediatrics (Dr. Michele Willems)
Provides neurodevelopmental evaluations and diagnosis.
Manages developmental disorders such as CP with assessment of motor, communication, and developmental delays.
Coordinates therapies and long-term support.
Website: https://www.bucksdevelopmental.com/
Children’s Hospital of Philadelphia (CHOP) – Cerebral Palsy Program
Comprehensive, multidisciplinary program.
Offers diagnosis, medical and surgical care, therapy coordination, and long-term management.
Includes a large resource database with family supports, safety information, parent groups, and research connections.
Website: https://www.chop.edu/centers-programs/cerebral-palsy-program
United Cerebral Palsy (UCP)
National nonprofit network offering advocacy, assistive technology, policy leadership, and local affiliate connections.
Helps families find local services and provides educational resources.
Website: https://www.ucp.org/
Access Services
Provides supports for children and adults with developmental disabilities, including CP.
Services include in-home supports, respite, behavioral health, day and employment programs, and supported living.
Website: https://www.accessservices.org/
Indian Creek Foundation
Offers behavioral health, day programs, residential services, and community-based supports for individuals with intellectual and developmental disabilities.
Relevant for children and adults with CP.
Website: https://www.indcreek.org/
Bucks County Department of Behavioral Health / Developmental Programs (BH/DP)
Oversees Early Intervention (ages 0–3), Intellectual Disability, Autism, and Developmental Delay services.
Helps coordinate therapies and long-term supports for children with CP.
Website: https://www.buckscounty.gov/601/Behavioral-Health-Developmental-Programs
Easterseals of Southeastern Pennsylvania – Bucks County Division
Provides early intervention, pediatric PT/OT/speech therapy, assistive technology, family support services, and preschool programs.
Supports children with disabilities including CP.
Website: https://www.easterseals.com/sepa/
Bucks County Center for Independent Living (BCCIL)
Supports older teens and adults with disabilities.
Provides peer mentoring, independent living skills training, advocacy, and transition services (school to adult life).
Website: https://www.buckscil.org/
Fetal Alcohol Spectrum Disorders (FASD); Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure
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Resources:
CHOP Child Evaluation Center (CEC) – FASD Diagnostic Program (Mays Landing, NJ)
Regional multidisciplinary clinic providing formal FAS/FASD evaluations.
Commonly used by PA families near Bucks.
Website: https://www.chop.edu/pages/child-evaluation-center
CHOP – Developmental & Behavioral Pediatrics (Chalfont, PA)
CHOP treats FASD-related concerns.
Bucks families can start at CHOP’s Bucks County Specialty Care (Chalfont) for referrals.
Website: https://www.chop.edu/locations/specialty-care-surgery-center-bucks-county
Bucks County Dept. of Health – Parenting & Maternity Care
Maternal Child Health home visiting and links (including Maternity Care Coalition).
Supports pregnancy and infant care for mothers and families in Bucks.
Website: https://www.buckscounty.gov/440/Health-Department
PA DHS – FASD Information Hub
State guidance, education, and links on FASD.
PA Families, Inc. – FASD Support
Family support groups, trainings, and a searchable resource hub (filter by county).
Website: https://www.pafamiliesinc.org/fetal-alcohol-spectrum-disorder
FASD United (formerly NOFAS) – Resource Directory & Family Navigator
National directory plus one-on-one navigation for services and supports.
Resource Directory: https://fasdunited.org/resource-directory/
Family Navigator: https://fasdunited.org/family-navigator/
Angelman Syndrome
Click to Learn More
Resources:
ASF Clinic at Children’s Hospital of Philadelphia (CHOP)
Appointments and contact information for CHOP’s Angelman Syndrome Foundation Clinic.
Website: https://angelman.org/asf-clinics/childrens-hospital-of-philadelphia/
CHOP Specialty Care & Surgery Center, Bucks County (Chalfont)
Local access point for families in Bucks County to connect with CHOP’s Angelman services.
Website: https://www.chop.edu/locations/specialty-care-surgery-center-bucks-county
Angelman Syndrome Foundation (ASF) – Resources Hub
Provides comprehensive resources, educational materials, research updates, and community support.
Website: https://angelman.org/resources/
ASF Clinic Network
National and international listing of ASF-affiliated clinics specializing in Angelman Syndrome care.
Website: https://angelman.org/asf-clinics/
Foundation for Angelman Syndrome Therapeutics (FAST)
Main organization funding research and treatments for Angelman Syndrome.
Main site: https://cureangelman.org/
Caregiver resources: https://cureangelman.org/resources/
ASF Adult and Transition Resources
Guidance for families supporting adolescents and adults with Angelman Syndrome, covering transitions to adulthood and long-term planning.
Website: https://angelman.org/asgrowsup/
Stepping Into AAC – ASF/PrAACtical AAC Toolkit
A 20-week toolkit for families to support communication through augmentative and alternative communication (AAC).
PrAACtical AAC page: https://praacticalaac.org/stepping-into-aac-home/
FAST – Speech Therapy and AAC Overview
Educational resources for families on speech therapy and AAC specific to Angelman Syndrome.
Website: https://cureangelman.org/speech-therapy-angelman-syndrome
22q11.2 Deletion Syndrome (DiGeorge Syndrome / VCFS)
Click to Learn More
Resources:
CHOP 22q and You Center
A nationally recognized clinic at CHOP that provides comprehensive multidisciplinary care for children with 22q11.2 Deletion Syndrome.
Website: https://www.chop.edu/centers-programs/22q-and-you-center
CHOP Patient Information – 22q11.2 Deletion & Duplication Syndromes
Educational overview and care information for families.
Website: https://www.chop.edu/conditions-diseases/22q112-deletion-and-duplication-syndromes
CHOP Specialty Care & Surgery Center, Bucks County (Chalfont)
Local access point for families in Bucks County to connect with CHOP’s 22q services.
Website: https://www.chop.edu/locations/specialty-care-surgery-center-bucks-county
International 22q11.2 Foundation
Provides family resources, educational materials, and advocacy for those affected by 22q.
Main site: https://22q.org/
Resources for families: https://22q.org/resources/for-families/
22q Family Foundation
Supports families with education, peer groups, FAQs, and connection opportunities.
Website: https://22qfamilyfoundation.org/
Tuberous Sclerosis Complex (TSC)
Click to Learn More
Resources:
CHOP Tuberous Sclerosis Clinic (Children’s Hospital of Philadelphia)
Multidisciplinary clinic providing coordinated medical care for individuals with Tuberous Sclerosis Complex.
Services include diagnosis, treatment planning, neurological care, genetics, dermatology, nephrology, cardiology, and developmental monitoring.
Website: https://www.chop.edu/centers-programs/tuberous-sclerosis-clinic
CHOP TSC Clinic Resources (Education and Safety Materials)
Extensive educational content for families regarding seizure management, organ involvement, behavioral and cognitive support, and emergency planning.
Website: https://www.chop.edu/centers-programs/tuberous-sclerosis-clinic/resources
TSC Alliance (National Organization)
Leading national organization for TSC awareness, advocacy, research, clinical trial coordination, and peer support.
Offers patient navigation, legislative advocacy, and family networking opportunities.
Website: https://www.tscalliance.org/
TSC Alliance – Find a TSC Clinic Directory
Nationwide listing of TSC Centers of Excellence and partner clinics.
Helps families locate the closest multidisciplinary treatment center.
Website: https://www.tscalliance.org/find-support/tsc-clinics/
TSC Alliance – Travel and Lodging Patient Assistance Program (with NORD partnership)
Financial assistance for travel and lodging to access specialty TSC care or participate in research studies.
Regional Access Points and Related Specialty Care
Bucks County
CHOP Specialty Care and Surgery Center, Bucks County (Chalfont)
Pediatric subspecialty access point for neurology and other services relevant to TSC for families in Bucks County.
Website: https://www.chop.edu/locations/specialty-care-surgery-center-bucks-county
Bucks Developmental Pediatrics (private practice)
Comprehensive evaluations and ongoing care for developmental, behavioral, and learning concerns that commonly co-occur with TSC.
Supports care coordination with neurology and other subspecialties.
Website: https://www.bucksdevelopmental.com/
St. Christopher’s Pediatric Associates – Developmental Medicine (Newtown and Yardley)
Developmental medicine clinics serving lower and central Bucks for evaluation and follow up, with referral pathways to neurology and related specialties.
Newtown and Yardley info: https://towerhealth.org/locations/st-christophers-pediatric-associates-developmental-medicine-newtown-yardley
Yardley page: https://towerhealth.org/locations/st-christophers-pediatric-associates-developmental-medicine-yardley
Lehigh Valley and Upper Bucks Adjacent
St. Luke’s Developmental Pediatrics (Center Valley)
Neurodevelopmental evaluations and follow up at St. Luke’s Pediatric Specialty Center, convenient to Upper Bucks.
Website: https://www.slhn.org/locations/stlukes-developmental-pediatrics
Lehigh Valley Health Network – Developmental and Behavioral Pediatrics (Allentown)
Hospital based developmental and behavioral pediatrics program near Upper Bucks.
Website: https://www.lvhn.org/medical-services/developmental-behavioral-pediatrics/locations
Montgomery County and Western Suburbs
CHOP – Developmental and Behavioral Pediatrics Locations (includes King of Prussia and other suburban sites)
CHOP DBP sites that serve Montgomery County families, with referral pathways into the TSC clinic and related subspecialties.
Website: https://www.chop.edu/centers-programs/developmental-and-behavioral-pediatrics/locations
Nemours Children’s Health – Abington (Jefferson Abington Hospital campus)
Pediatric specialty clinic listing developmental and behavioral pediatrics among services, with access to neurology and care coordination.
Website: https://www.nemours.org/locations/pennsylvania-pediatric-specialty-care-abington.html
Philadelphia
CHOP – Division of Developmental and Behavioral Pediatrics (University City and multiple sites)
Full DBP programs with integrated care and referral connectivity to CHOP’s TSC Clinic and pediatric neurology, nephrology, dermatology, and cardiology.
Website: https://www.chop.edu/centers-programs/developmental-and-behavioral-pediatrics
Einstein Healthcare Network and Jefferson Health – Developmental and Behavioral Pediatrics
DBP clinics in Northeast Philadelphia with developmental assessments and care coordination.
Website: https://providers.einstein.edu/specialty/developmental-behavioral%20pediatrics
Jefferson Health – Autism and Neurodiversity / Developmental and Behavioral Services
Developmental behavioral specialists provide diagnostics and management services within the Jefferson network, with referral pathways to neurology and subspecialties.
Website: https://www.jeffersonhealth.org/clinical-specialties/autism-neurodiversity
St. Christopher’s Hospital for Children (Philadelphia)
Pediatric academic center with developmental and behavioral services, plus subspecialty access and referral pathways to neurology.
Website: https://drexelmedicine.org/patient-services/pediatrics/
Nearby New Jersey
Hunterdon Health – Developmental Pediatric Associates (Flemington, Hunterdon County)
Neurodevelopmental pediatric evaluations and treatment within the Child Development Center.
Website: https://www.hunterdonhealth.org/services/child-development-center/developmental-pediatric-associates
RWJBarnabas Health / Children’s Specialized Hospital – Developmental and Behavioral Pediatrics (Hamilton, Mercer County)
Multisite DBP program. Hamilton is convenient to Lower Bucks and the greater Philadelphia region.
CHOP – Voorhees, NJ Specialty Care
CHOP Specialty Care site just across the river. Subspecialty access point and referral pathway into CHOP’s TSC Clinic.
Website: https://www.chop.edu/locations/specialty-care-surgery-center-voorhees
Cooper University Health Care – Child Development Center (Voorhees, Camden County)
Comprehensive developmental diagnostics and management within Cooper’s pediatric system with referral pathways to neurology and related specialties.
Website: https://www.cooperhealth.org/services/child-developmental-center
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