Rhode Island

Suggest a Resource

 

Achondroplasia
Contact: Amy D’Avia
Email: lpa.districtone@gmail.com
Website: http://www.lpadistrictone.org

 

Angelman syndrome
Epilepsy Foundation Massachusetts, Rhode Island, New Hampshire & Maine
540 Gallivan Blvd, 2nd Floor
Boston, MA, 02124
Website: http://www.epilepsynewengland.org

Special Format Library
Talking Books Plus
Office of Library and Information Services
One Capitol Hill
Providence, RI, 02908
Website: http://www.olis.ri.gov/tbp/

Speech, Language, and Hearing
Rhode Island Speech-Language-Hearing Association
P.O. Box 9241
Providence, RI, 02940
Website: http://www.risha.info

 

Autism
FEAT/RI
PO Box 8460
CranstonRI
401 886 5015
Contact: Breta Combs
Email: info@featri.org
Website: http://www.featri.org

RIARC
99 Bald Hill Road
CranstonRI 2920
Phone: (401) 463-9191
Contact: Mary Lou McCaffrey
Email: RhodeIslandArc@cs.com

Easter Seals Rhode Island
213 Robinson Street
WakefieldRI
Phone: (401) 284-1000
Contact: May Insley
Email: linsley@eastersealsri.org
Website: http://www.eastersealsri.org

Rhode Island Parent Information Network (RIPIN)
1210 Pontiac Avenue
CranstonRI 02920
Phone: (401) 270-0101, (800) 464-3399
Website: http://www.ripin.org

Support:
Aspergers Parent Support Group
Pine Room at Bradley Hospital 1011 Veterans Memorial Parkway
RiversideRI 2915
Phone: (401) 333-1705
Contact: Barbara Whalen

The Autism Project
1516 Atwood Ave
JohnstonRI 02919
Phone: (401) 785-2666
Contact: Susan Baylis, Parent Consultant, RIPIN
Email: susan@theautismproject.org
Website: http://www.theautismproject.org

Other Resources: https://www.autismspeaks.org/resource-guide/state/RI

 

Blind
Educational Services:
Paul V. Sherlock Center on Disabilities
Rhode Island College
600 Mt. Pleasant Avenue
Providence, RI 02908
Phone: (401) 456-8910
Fax: (401) 456-8919
TDD/TTY: (401) 456-8773
Website: http://www.ric.edu/sherlockcenter/vision.html

Rehabilitation Services:
Rhode Island Department of Human Services: Services for the Blind and Visually Impaired
40 Fountain Street
Providence, RI 02903-1898
Phone: (401) 277-2382
Fax: (401) 222-1328
Toll-Free: (800) 752-8088
Website: http://www.ors.state.ri.us

NLS Library:
Talking Books Plus, Office of Library and Information Services
One Capitol Hill
Providence, RI 02908
Phone: (401) 574-7310
Fax: (401) 574-9320
Email: olis.tbplus@olis.ri.gov
Website: http://www.olis.ri.gov/tbp/

Other Agencies:
IN-SIGHT
43 Jefferson Boulevard, Suite 1
Warwick, RI 02888
Phone: (401) 941-3322
Fax: (401) 941-3356
Email: cbutler@in-sight.org
Website: http://www.IN-SIGHT.org

Rhode Island Department of Human Services: Center for Child and Family Health
74 West Road, Building 74
Cranston, RI 02920
Phone: (401) 462-3425
Fax: (401) 462-2939
Toll-Free: (800) 942-7434
Website: http://www.eohhs.ri.gov/Consumer/FamilieswithChildren/EarlyIntervention.aspx

Rhode Island Parent Information Network
1210 Pontiac Avenue
Cranston, RI 02820
Phone: (401) 270-0101
Toll-Free: (800) 464-3399
Email: info@ripin.org
Website: http://www.ripin.org

TechACCESS of Rhode Island
110 Jefferson Blvd, Suite I
Warwick, RI 02888
Phone: (401) 463-0202
Fax: (401) 463-3433
Email: techaccess@techaccess-ri.org
Website: http://www.techaccess-ri.org/

 

Cerebral Palsy
UCP of Rhode Island
200 Main St. Suite 210
Pawtucket, RI 02860
Phone (401) 728-1800
Website: http://www.ucpri.org

 

Cleft Lip and/or Cleft Palate
Cleft and Craniofacial Center – CPT, CFT
Hasbro Children’s Hospital
2 Dudley St
MOC-180
Providence, RI 02905-3236
Phone: (401) 444-2299
Fax: (401) 444-2924
Patient Age Range: 0-99
Team Leader: Albert S. Woo, MD
Coordinator(s): Gena Felix
Email: Gena.Felix@Lifespan.org
Website: http://www.hasbrochildrenshospital.org/cleft-and-craniofacial

 

Dubowitz syndrome
Rhode Island State Association
Warwick Public Library
600 Sandy Lane
Warwick, RI 02889
Betsy Beach
Email: betsybeach@verizon.net
Website: http://hlari.blogspot.com

Warwick Public Library
600 Sandy Lane
Warwick, RI 02889
Phone: (401) 338-5329
Contact: George Herchenroether
Email: newportherk@gmail.com  
Website: http://hlari.blogspot.com

 

Developmental Disabilities
The Arc of Blackstone Valley
500 Prospect Street
Pawtucket, RI 02860
Phone: (401) 727-0150
Email: khunt@bvcriarc.org
Website: http://www.bvcriarc.org

 

Down syndrome
Down Syndrome Society of Rhode Island
Cranston, RI
Phone: (401) 463-5751
Email: coordinator@dssri.org
Website: http://www.dssri.org

 

Dwarfism
Contact: Amy D’Avia
Email: lpa.districtone@gmail.com
Website: http://www.lpadistrictone.org

 

Edwards syndrome
Lexington, MA
Phone: (781) 862-8273   (339) 221-1113
Contact: Michael and Pam Healey
Email: healeylex@aol.com

 

Epilepsy
Epilepsy Foundation New England
335 Main Street #8
Wilmington, Massachusetts 01887
Phone: (617) 506-6042
Toll Free: (888) 576-9996

 

Hydrocephalus
Providence Area
Contact: Jessica Young
Email: ProvidenceCommunity@hydroassoc.org

 

Intellectual Disabilities
The Arc of Blackstone Valley
500 Prospect Street
Pawtucket, RI 02860
Phone: (401) 727-0150
Email: khunt@bvcriarc.org
Website: http://www.bvcriarc.org

 

Patau syndrome
Lexington, MA
Phone: (781) 862-8273, (339) 221-1113
Contact: Michael and Pam Healey
Email: healeylex@aol.com

 

Pierre Robin Sequence
Cleft and Craniofacial Center – CPT, CFT
Hasbro Children’s Hospital
2 Dudley St
MOC-180
Providence, RI 02905-3236
Phone: (401) 444-2299
Fax: (401) 444-2924
Patient Age Range: 0-99
Team Leader: Albert S. Woo, MD
Coordinator(s): Gena Felix
Email: Gena.Felix@Lifespan.org
Website: http://www.hasbrochildrenshospital.org/cleft-and-craniofacial

 

Prader-Willi syndrome
New England PWSA
Phone: (978) 207-1185
Contact: Mary Raymond
Email: murphyno7@aol.com

 

Tessier Cleft
Cleft and Craniofacial Center – CPT, CFT
Hasbro Children’s Hospital
2 Dudley St
MOC-180
Providence, RI 02905-3236
Phone: (401) 444-2299
Fax: (401) 444-2924
Patient Age Range: 0-99
Team Leader: Albert S. Woo, MD
Coordinator(s): Gena Felix
Email: Gena.Felix@Lifespan.org
Website: http://www.hasbrochildrenshospital.org/cleft-and-craniofacial

 

Trisomy 9
Lexington, MA
Phone: (781) 862-8273, (339) 221-1113
Contact: Michael and Pam Healey
Email: healeylex@aol.com

 

Online Support:
Achondroplasia: LPA District 1
Aicardi syndrome: Aicardi syndrome
Alobar Holoprosencephaly: Alobar Holoprosencephaly
Amniotic Band syndrome: Amniotic band syndrome (ABS)
Angelman syndrome: Angelman Syndrome Foundation
Apert syndrome: Apert International (Apert USA)
Aplasia Cutis Congenita: Aplasia Cutis Congenita Support Group
Arthrogryposis: Arthrogryposis
Asparagine Synthetase Deficiency: Asparagine Synthetase Deficiency (ASNS gene)
Ataxic Cerebral Palsy: Families with children who have Ataxic Cerebral Palsy
Autism: National Autism Association
Bi-lateral Renal Agenesis: Bi-lateral Renal Agenesis (Potters Syndrome)
Blind: Family ConnectBlind and visually impaired support group
Bohring-Optiz syndrome: Bohring-Optiz Syndrome Connection
Cerebral Palsy: United Cerebral Palsy of Rhode Island
CHARGE syndrome: CHARGE Syndrome
Congenital Heart Defect: Children with congenital heart defectsBreastfeeding Children with Congenital Heart DefectsCongenital Heart Defect Healthy Eating GroupAdults with Congenital Heart Defects 
Cleft Lip/Palate: Support Group for Adults born with Cleft Lip and PalatesCleft Lip and Palate Foundation of Smiles, Cleft Lip & Palate Association
Clubbed Feet: Clubbed Foot support groupClub Feet Support Group for Parents
Cornelia De Lange syndrome: Cornelia De Lange Syndrome
Cortical Visual Impairment: Cortical Visual Impairment (CVI) Awareness
Crouzon syndrome: Crouzon Syndrome
Cystic Hygroma: Cystic Hygroma
Cytomegalovirus (CMV): CMV Family Support
Dandy Walker syndrome: Dandy-Walker SyndromeDandy Walker parents,
Deaf: Community for the Deaf and Hard of HearingParents of Hearing Impaired Children
Dubowitz syndrome: Dubowitz Syndrome Network
Developmental Disabilities: Developmental Disabilities Support Page 
Diaphragmatic Hernia: Rhode Island Cherubs- Congenital Diaphragmatic Hernia Charity
DiGeorge syndrome: Di George Syndrome, 22q11.2 Deletion, Digeorge, VCFS etc
Down syndrome: Down Syndrome Society of RI, Inc
Dwarfism: Dwarfism, Little People of the World Organization,
Edwards syndrome: edwards syndrome (trisomy18)Edwards Syndrome Families & Support – Trisomy 18Trisomy 18 Foundation Parents Connect
Encephalocele: Encephalocele Parent SupportEncephalocele Support
Epilepsy: RI Epilepsy Peer and Support Advocacy Network
Hydrocephalus: State of Alabama Hydrocephalus Association Community Network
Hydrops Fetalis: Hydrops Fetalis Support GroupHydrops Fetalis Parents Support Group
Intellectual Disability: Intellectual Disabilities Support Group
Koolen de Vries syndrome: Koolen de Vries Syndrome – 17q21.31 Microdeletion Syndrome Support Group
Limb Difference: Beautiful Limb Differenceslimb difference makes no difference
Lissencephaly: Lissencephaly,  Lissencephaly Network
McCune-Albright syndrome: MAS/FD McCune-Albright Syndrome/Fibrous Dysplasia- The MAGIC FoundationMcCune Albright Syndrome and Fibrous Dysplasia
Microcephaly: Microcephaly Support Group,  Foundation for Children with Microcephaly- Official GroupMicrocephaly
Moebius syndrome: Many Faces of Moebius SyndromeMoebius syndrome Technology
Nager syndrome: Nager Syndrome
Patau syndrome: Trisomy 13 Life- Living with Patau Syndrome
Pierre Robin Sequence: Pierre Robin SequencePierre Robin Sequence Support, Awareness & Research,
Polymicrogyria: Polymicrogyria (PMG) SupportPMG Awareness Organization’s Group Page (polymicrogyria)
Potocki-Shaffer syndrome: Potocki Shaffer syndrome Family Group
PPP2R5D: PPP2R5D Families
Prader-Willi syndrome: Prader Willi Syndrome Open ForumPrader-Willi Support
Renal Agenesis: Born With A Single Kidney
Rhizomelic Chondrodysplasia Punctata (RCDP): RCDP/Rhizomelic Chondrodysplasia Punctata
Sanfilippo syndrome: Sanfilippo syndrome Support Group
Semi-lobar Holoprosencephaly: Our Olive Grace-  Semi-lobar Holoprosencephaly
Spina Bifida: Spina Bifida Support Group
Symbrachydactyly: SymbrachydactylyHelping Hands (Symbrachydactyly)
Tessier cleft: Tessier Clefts
Trisomy 9: Trisomy 9 Family 
Turner syndrome: Turner syndrome,  Turner Syndrome Connections 
VACTERL/VATER Association: VATER and VACTERL Association AwarenessVacterl and vater Association group for parents and families 
Ventriculomegaly:  VentriculomegalyBabies with ventriculomegaly

Our whole mission at Orange Socks is to be there for you.

Our whole intent is to guide you from a resources page to a forum for parents…from the links to national organizations to providing you with support where the expectant parent can be linked with a parent who has a similar situation and diagnosis. We are there to support and encourage you.

Orange Socks knows that there is no greater pain in your heart than the knowledge that your child will be born with a disability or lifelong condition, or diagnosed with one at a very young age. And it is with tremendous humility that we look forward to helping you face this challenge. Even as your heart is heavy, there’s light at the end of every tunnel. Getting to it is our job.

Suggest a Local Resource

Know of a great resource that you don’t see listed here? Submit your suggestion in the form below.