
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 Hartford, CT 6110
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
Canton, CT 06019
Phone: (860) 693-8809, (860) 693-6086
Applied Behavior Analysis Services of CT
Manchester, CT 06040
Connecticut Center for Child Development (CCCD), Inc
95 Wolf Harbor Rd.
Milford, CT 06461
Support:
Sibshop
Yale-New Haven Children’s Hospital SP 7-414 20 York St.
New Haven, CT 6504
Innovative Autism Network
17 Farmington Ave
Plainville, CT 6062
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
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
Secretary: Peg Slinsky
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
Coordinator: Laura Ludoviconi
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
Coordinator: Laura Ludoviconi
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 Connect,
Blind 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 defects,
Breastfeeding Children with Congenital Heart Defects,
Congenital Heart Defect Healthy Eating Group,
Adults with Congenital Heart Defects
Cleft Lip/Palate:
Support Group for Adults born with Cleft Lip and Palates,
Cleft Lip and Palate Foundation of Smiles, Cleft Lip & Palate Association
Clubbed Feet:
Clubbed Foot support group,
Club 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 Syndrome,
Dandy Walker parents,
Deaf:
Community for the Deaf and Hard of Hearing,
Parents 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 18,
Trisomy 18 Foundation Parents Connect
Encephalocele:
Encephalocele Parent Support,
Encephalocele Support
Epilepsy:
Connecticut Epilepsy Advocate, Inc
Hydrocephalus:
State of Connecticut Hydrocephalus Association Community Network
Hydrops Fetalis:
Hydrops Fetalis Support Group,
Hydrops 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 Differences,
limb difference makes no difference
Lissencephaly:
Lissencephaly,
Lissencephaly Network
McCune-Albright syndrome:
MAS/FD McCune-Albright Syndrome/Fibrous Dysplasia- The MAGIC Foundation,
McCune Albright Syndrome and Fibrous Dysplasia
Microcephaly:
Microcephaly Support Group,
Foundation for Children with Microcephaly- Official Group,
Microcephaly
Moebius syndrome:
Many Faces of Moebius Syndrome,
Moebius syndrome Technology
Nager syndrome:
Nager Syndrome
Patau syndrome:
Trisomy 13 Life- Living with Patau Syndrome
Pierre Robin Sequence:
Pierre Robin Sequence,
Pierre Robin Sequence Support, Awareness & Research,
Polymicrogyria:
Polymicrogyria (PMG) Support,
PMG Awareness Organization’s Group Page (polymicrogyria)
Potocki-Shaffer syndrome:
Potocki Shaffer syndrome Family Group
PPP2R5D:
PPP2R5D Families
Prader-Willi syndrome:
Prader Willi Syndrome Open Forum,
Prader-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:
Symbrachydactyly,
Helping 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 Awareness,
Vacterl and vater Association group for parents and families
Ventriculomegaly:
Ventriculomegaly,
Babies with ventriculomegaly