Connecticut

Suggest a Resource
Achondroplasia
Contact: Amy D’Avia
Email: lpa.districtone@gmail.com
Website: www.lpadistrictone.org

Angelman syndrome
Epilepsy
Epilepsy Foundation of Connecticut, Inc.
386 Main Street
Middletown , CT , 06457
Phone: (800) 899-3745, (860) 346-1924
Intellectual & Developmental Disabilities
The ARC of Connecticut
200 Research Pkwy
Meriden, CT, 06450
Phone: (203) 514-3028
Parent Resources
AFCAMP, Hartford-New Haven CPRC
60 Weston St., Ste B
Hartford , CT , 06120
Phone: (860) 548-9959
Speech, Language, and Hearing
Connecticut Speech-Language-Hearing Association
124 Kennerson Road
Eastford , CT , 06242
Phone: (860) 666-6900
Autism

Arc of Connecticut

1030 New Britain Avenue Suite 102

West HartfordCT 6110

Phone: (860) 953-8335

Connecticut Autism Spectrum Resource Center (ASRC)
203 265 7717
Contact: Lois Rosenwald
Email: Lois.asrc@sbcglobal.com
Website: http://www.ct-asrc.org

FOCUS Center for Autism

126 Dowd Ave

CantonCT 06019

Phone: (860) 693-8809, (860) 693-6086
Contact: Yvonne Gardner

Applied Behavior Analysis Services of CT
ManchesterCT 06040

Phone: (860) 933-5751
Contact: Kristine Brewer, BCBA

Connecticut Center for Child Development (CCCD), Inc

95 Wolf Harbor Rd.

MilfordCT 06461

Phone: (203) 882-8810

Support:
Sibshop

Yale-New Haven Children’s Hospital SP 7-414 20 York St.

New HavenCT 6504

Phone: (203) 688-6880
Program Coordinator: Erin Spaulding, MS, CCLS
Email: Erin.Spaulding@ynhh.org

Innovative Autism Network

17 Farmington Ave

PlainvilleCT 6062

Phone: (860) 351-5407
Contact: Marcela Nunez M.A, BCBA
Blind
Educational Services
Connecticut State Department of Education: Bureau of Early Childhood, Career and Adult Education, Preschool Special Education Program
25 Industrial Park Road
Middletown, CT 06457
Phone: (860) 807-2054
Fax: (860) 807-2062
(800) 505-7000 (Toll-Free)
Department of Rehabilitation Services-Bureau of Education & Services for the Blind
184 Windsor Avenue
Windsor, CT 06095
Phone: (860) 602-4000
Fax: (860: (860) 602-4221
Connecticut State Education Resource Center
25 Industrial Park Road
Middletown, CT 06457
Phone: (860) 632-1485
Rehabilitation Services:
Department of Rehabilitation Services-Bureau of Education & Services for the Blind
184 Windsor Avenue
Windsor, CT 06095
Phone: (860) 602-4000
Fax: (860) 602-4020
TDD/TTY: (860) 602-4221
NLS Library:
Library for the Blind and Physically Handicapped, Connecticut State Library
198 West Street
Rocky Hill, CT 06067
Phone: (860) 721-2020
Fax: (860) 721-2056
Other Agencies:
Connecticut Birth to Three System
450 Columbus Boulevard
Hartford, CT 06103-1835
Phone: (860) 713-5013
Toll-Free: (800) 500-4433
Connecticut Braille Association
44 Imperial Avenue
Westport, CT 06880
Phone: (203) 227-5243
Healthy Eyes Alliance
129 Church Street
Suite 820
New Haven, CT 06510
Phone: (203) 772-4652
Fax: (203) 772-4691
Toll-Free: (800) 850-2020
Lions Low Vision Center of Eastern Connecticut
PO Box 43
Colchester, CT 06415
Phone: (860) 377-2063
Lions Low Vision Centers, Inc.
33 Highland Street
New Britain, CT 06052
Phone: (860) 832-9601
Fax: (860) 832-9604
Toll-Free: (800) 676-5715
National Resource Center for Blind Musicians
National Resource Center for Blind Musicians
Neighborhood Studios of Fairfield County
391 East Washington Avenue
Bridgeport, CT 06608
Phone: (203) 366-3300
Fax: (203) 368-2847
Oak Hill
120 Holcomb Street
Hartford, CT 06112
Phone: (860) 242-2274
Fax: (860) 242-3103
Parent to Parent of Connecticut
Parents Available to Help, Inc.
P.O. Box 117
Northford, CT 06472
Phone: (203) 234-9554
Fax: (203) 234-1876
Cerebral Palsy
UCP of Eastern Connecticut
42 Norwich Rd.
Quaker Hill, CT 06375
Phone (860) 443-3800
Website: http://ucpect.org
UCP of Greater Hartford
80 Whitney St.
Hartford, CT 06105
Phone (860) 236-6201
Congenital Heart Defect
Connecticut Adult Congenital Heart Service (CTACH)
Connecticut Children’s Medical Center
Hartford, CT
Phone: (860) 545-9400
Medical Director: Shailendra Upadhyay, MD, CEPS, FHRS
Yale Adult Congenital Heart Program
Yale New Haven Hospital
New Haven, CT
Phone: (203) 785-2022
Medical Director: John Fahey, MD
Cleft Lip and/or Cleft Palate 
Craniofacial Team – CPT, CFT
Connecticut Children’s Medical Center
282 Washington St Ste 2L
Hartford, CT 06106-3322
Phone: (860) 545-9360
Fax: (860) 545-9365
Patient Age Range: 0-25 – then individual special cases over age 25
Team Leader: Charles L. Castiglione, MD

Coordinator: Monique France, RN

Yale Craniofacial Center – CPT, CFT
1 Long Wharf Dr Ste 210
New Haven, CT 06511-5991
Phone: (203) 737-2049
Fax: (203) 785-5714
Patient Age Range: 0-18
Team Leader: Derek M. Steinbacher, MD, DMD

Coordinator: Laura Ludoviconi

Crouzon syndrome
Connecticut Children’s Medical Center
282 Washington Street Suite 2L
Hartford, CT 06106
Phone: (860) 545-9360
Directors: Charles L. Castiglione, MD; Paul Kanev, MD
Coordinator: Monique France
Yale Craniofacial Center
800 Howard Ave, 4th Floor
New Haven, CT 06511
Phone: (203) 737-2049, (203) 785-2571
Directors: John A. Persing, MD; Derek Steinbacher, MD
Coordinator: Laura Ludoviconi
Dubowitz syndrome
Eastern Connecticut Chapter
Meet at 10 a.m. on the third Saturday of every month (September – July)
Phillips Communication Sciences Building
UCONN
850 Bolton Road
Storrs, CT 06269
Phone: (860) 659-8082
Contact: Randy Kirsch   
Hartford Chapter
Contact: Terry Bedard   
Norwalk Senior Center
11 Allen Road
Norwalk, CT 06851
Vice President: Marcia Zola
Phone: (203) 374-7736
Email: mczola@optonline.net 
Secretary: Peg Slinsky
Phone: (203) 656-2733
Email: gjsmms@optonline.net 
Developmental Disabilities
The Arc of Connecticut
200 Research Pkwy
Meriden, CT 06450-7171
Phone: (860) 246-6400
DiGeorge syndrome
Contact: Paula Uccello
Phone: 860-705-8083
Down Syndrome 
Connecticut Down Syndrome Congress
Meridien, CT
Phone: (888) 486-8537
Dwarfism
Contact: Amy D’Avia
Edwards syndrome
Lisa and Bob Handel
East Hartford, CT
Phone: (860) 568-0171
Epilepsy 
Epilepsy Foundation Connecticut
386 Main St
Middletown, Connecticut 06457-3360
United States
Phone: (860) 346-1924
Toll Free: (800) 899-3745
Hydrocephalous
Hartford Area
Contact: Tracy Taback
Intellectual Disabilities
The Arc of Connecticut
200 Research Pkwy
Meriden, CT 06450-7171
Phone: (860) 246-6400
Patau Syndrome
East Hartford, CT
Contact: Lisa and Bob Handel
Phone: (860) 568-0171
Pierre Robin Sequence
Craniofacial Team – CPT, CFT
Connecticut Children’s Medical Center
282 Washington St Ste 2L
Hartford, CT 06106-3322
Phone: (860) 545-9360
Fax: (860) 545-9365
Patient Age Range: 0-25 – then individual special cases over age 25
Team Leader: Charles L. Castiglione, MD

Coordinator: Monique France, RN

Yale Craniofacial Center – CPT, CFT
1 Long Wharf Dr Ste 210
New Haven, CT 06511-5991
Phone: (203) 737-2049
Fax: (203) 785-5714
Patient Age Range: 0-18
Team Leader: Derek M. Steinbacher, MD, DMD
Polymicrogyria
Sandy Hook
Julie Polk Hasselberger
Prader-Willi syndrome
PWSA of Connecticut
Phone: (631) 901-2357
President: Christine Geraci
Tessier cleft
Craniofacial Team – CPT, CFT
Connecticut Children’s Medical Center
282 Washington St Ste 2L
Hartford, CT 06106-3322
Phone: (860) 545-9360
Fax: (860) 545-9365
Patient Age Range: 0-25 – then individual special cases over age 25
Team Leader: Charles L. Castiglione, MD

Coordinator: Monique France, RN

Yale Craniofacial Center – CPT, CFT
1 Long Wharf Dr Ste 210
New Haven, CT 06511-5991
Phone: (203) 737-2049
Fax: (203) 785-5714
Patient Age Range: 0-18
Team Leader: Derek M. Steinbacher, MD, DMD
Trisomy 9 
Lisa and Bob Handel
East Hartford, CT
Phone: (860) 568-0171
Turner’s syndrome
Pediatric Endocrinology
282 Washington St
Hartford, Connecticut
Phone: (860) 837-6700
Contact: Dr. Karen Rubin
Internal Medicine
2055 Chapel Street
New Haven, Connecticut
Contact: Dr. Joanne Foodim
Clinics
Connecticut Children’s Medical Center
282 Washington Street
Hartford, CT 06106
Phone: (860) 545-9000
Contact: Karen Rubin, MD
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: Autism Families CONNECTicut, Inc. 
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: UCP of Eastern CT, United Cerebral Palsy of Greater Hartford
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 , The Arc Conneticut
Diaphragmatic Hernia: Connecticut Cherubs- Congenital Diaphragmatic Hernia Charity
DiGeorge syndrome: Di George Syndrome, 22q11.2 Deletion, Digeorge, VCFS etc
Down syndrome: Eastern Connecticut Down Syndrome Awareness, Advocacy And Support 
Dwarfism: Dwarfism, Little People of the World Organization, LPA District 1
Edwards syndrome: edwards syndrome (trisomy18)Edwards Syndrome Families & Support – Trisomy 18Trisomy 18 Foundation Parents Connect
Encephalocele: Encephalocele Parent SupportEncephalocele Support
Epilepsy: Connecticut Epilepsy Advocate, Inc 
Hydrocephalus: State of Connecticut Hydrocephalus Association Community Network
Hydrops Fetalis: Hydrops Fetalis Support GroupHydrops Fetalis Parents Support Group
Intellectual Disability: Intellectual Disabilities Support Group, The Arc
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: Connecticut Parents of Children With Spina Bifida
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.

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