Massachusetts

Suggest a Resource

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

 

Angelman syndome
Special Format Library
Braille and Talking Book Library Perkins School for the Blind
175 N. Beacon Street
Watertown, MA, 02472
Website: http://www.perkinslibrary.org

Community Parent Resource Center
Urban PRIDE (Serving the city of Boston)
One Westinghouse Plaza Building D, Suite 11
Hyde Park, MA, 02136
Website: http://www.urbanpride.org

Epilepsy Foundation New England Headquarters
540 Gallivan Blvd., 2nd Floor
Boston, MA, 02124
Website: http://www.epilepsynewengland.org/

 

Autism
Community Autism Resources
2315 Grand Army of the Republic Highway
Swansea, MA 02777-3910
Phone: (508) 379-0371, (800) 588-9239
Contact: Barbara Domingue
Email: barbaradomingue@community-autism-resources.com
Website: http://www.community-autism-resources.org

National Autism Center
41 Pacella Park Drive
Randolph, MA 02368
Phone: (877) 313-3833
Website: http://www.nationalautismcenter.org

The Autism Resource Center of Central Massachusetts
71 Sterling Street
West Boylston , MA 01583
Phone: (508) 835-4278
Email: 
info@autismresourcecentral.org
Website: http://www.autismresourcecentral.org

Child Development Network
76 Bedford St. Suite 12
Lexington, MA 2420
Phone: (781) 861-6655
Email: info@cdnkids.com
Website: http://www.cdnkids.com

Support Groups:
Asperger’s syndrome Support Groups
Community Resources for People with Autism
116 Pleasant Street
Easthampton, MA 1027
Contact: Michael Reinhagen
Email: mreinhagen@gmail.com

Asperger/Autism Network
Norman-Kent Building, 51 Water St. Suite 206
Watertown , MA 02472
Phone: (617) 393-3824, (866) 597-2263
Email: info@aane.org
Website: http://www.aane.org

The Southcoast Autism Center
69 Main St.
Fairhaven , MA 02719
Phone: (508) 997-1311
Contact: Tiffany Carrazedo
Email: admin@scautismcenter.com
Blind
Educational Services
Massachusetts Department of Elementary and Secondary Education
Special Education Planning and Policy Development
350 Main Street
Malden, MA 02148
Phone: (781) 338-3375
Website: http://www.doe.mass.edu
Perkins School for the Blind
175 North Beacon Street
Watertown, MA 02472
Phone: (617) 924-3434
Rehabilitation Services:
Massachusetts Commission for the
Blind 600 Washington Street
Boston, MA 02111
Phone: (617) 727-5550
Fax: (617) 626-7685
Toll-Free: (800) 392-6450
NLS Library
Perkins Library
175 North Beacon Street
Watertown, MA 02472
Phone: (617) 972-7240
Fax: (617) 972-7363
TDD/TTY: (617) 972-7690
Worcester Talking Book Library at Worcester Public Library
3 Salem Square
Worcester, MA 01608-2074
Phone: (508) 799-1730
Fax: (508) 799-1656
Toll-Free: (800) 762-0085
TDD/TTY: (508) 799-1724
Other Agencies:
Massachusetts American Macular Degeneration Foundation
P.O. Box 515
Northampton, MA 01061-0515
Phone: (413) 268-7660
Toll-Free: (888) 622-8527
Boston University Eye Associates
2005 Bay Street Suite 201
Taunton, MA 02780
Phone: (508) 823-7473
Fax: (508) 824-3830
Braille Co., Inc.
38 Peterson Road
Falmouth, MA 02540
Phone: (508) 540-0800
Carroll Center for the Blind
770 Centre Street
Newton, MA 02458-2597
Phone: (617) 969-6200
Fax: (617) 969-6204
Toll-Free: (800) 852-3131

 

Cerebral Palsy
UCP of Berkshire County
208 W St.
Pittsfield, MA 01201
Phone: (413) 442-1562
Website: http://ucpberkshire.org
UCP of MetroBoston
71 Arsenal St.
Watertown, MA 02472
Phone: (617) 926-5480
Website: http://www.ucpboston.org

 

Congenital Heart Defect
Boston Adult Congenital Heart and Pulmonary Hypertension Program
Boston Children’s Hospital
Boston, MA
Phone: (617) 355-6508
Medical Contact: Michael Landzberg, MD

Center for Adults with Congenital Heart Disease,
Tufts Medical Center
Boston, MA
Phone: (617) 636-5846
Medical Contact: Jeffrey T. Kuvin, MD

Massachusetts General Hospital Adult Congenital Heart Disease Program Massachusetts General Hospital
Boston, MA
Phone: (617) 726-8510
Medical Contact: Ami B. Bhatt, MD, FACC

 

Cleft Palate and/or Cleft Lip
Boston Cleft & Craniofacial Center at Mass General Hospital for Children and Shriners Hospital for Children – CPT Shriners Hospital for Children 51 Blossom St Boston, MA 02114-2601
Phone: (617) 371-4730
Fax: (617) 371-4827
Team Leader: Eric C. Liao, MD, PhD
Coordinator: Kathy Hannigan, RN, BSN
Patient Age Range: 0-21
Email: khannigan@shrinenet.org
Website: http://www.shrinershospitalsforchildren.org/en/Locations/boston/Care/CleftLipPalate

Boston Cleft Lip and Palate Clinic at Tufts Medical Center – CPT
800 Washington St # 850
Boston, MA 02111-1552
Phone: (617) 636-2820
Fax: (617) 636-1479
Team Leader: Andrew R. Scott, MD, FACS
Coordinator: Cattleya May, NP
Patient Age Range: 0-50
Email: cleftteam@tuftsmedicalcenter.org
Website: http://www.floatinghospital.org/cleft

Boston Craniofacial Centre – CPT, CFT
Boston Children’s Hospital
300 Longwood Ave
Boston, MA 02115-5724
Phone: (617) 355-6309
Fax: (617) 738-1657
Patient Age Range: 0-21
Team Leader: John Butler Mulliken, MD
Coordinator: Samantha Hall
Email: samantha.hall@childrens.harvard.edu
Website: http://www.childrenshospital.org/clinicalservices/Site1858/mainpageS1858P0.html

Springfield Cleft Lip and Palate Clinic – CPT
Shriners Hospital for Children-Springfield
516 Carew St
Springfield, MA 01104-2396
Phone: (413) 787-2027
Fax: (413) 787-2012
Patient Age Range: 0-21
Team Leader: Philip B. Stoddard, MD
Coordinator: Teresa Lynch, RN; Elizabeth Starzyk, RN
Email: pstoddard@shrinenet.org
Website: http://www.shrinershospitalsforchildren.org/springfield

Worcester UMMHC Craniofacial Clinic – CPT UMMHC Hahnemann Campus
281 Lincoln St Plastic Surgery
Worcester, MA 01605-2192
Phone: (508) 793-5347
Fax: (508) 334-5152
Patient Age Range: 0-99
Team Leader: Janice F. Lalikos, MD, MA
Coordinator: Holly O’Neil
Email: holly.oneil@umassmemorial.org
Website: http://www.umassmemorial.org/craniofacial

 

Crouzon syndrome
Children’s Hospital of Boston Cleft and Craniofacial Center
Fegan Building, 3rd Floor 300 Longwood Ave.
Boston, MA 02115
Phone: (800) 735-6309, (617) 355-6309
Surgical Contacts: John Mulliken, MD; Mark Proctor, MD; Bonnie Padwa, MD; Johyn Meara, MD
Administrative Contact: Samantha Hall
Email: samantha.hall@childrens.harvard.edu
Website: http://www.childrenshospital.org

 

Dubowitz syndrome
Massachusetts Eye and Ear Infirmary,
Meltzer Auditorium Or Sloane Teaching Room
3rd Floor 243 Charles St.
Boston, MA 02114
Contact: Peggy Ellertsen
Email: HLAABoston@gmail.com
Website: http://www.hearinglossboston.org

Cape Cod Chapter:
Bill McCormick
Email: billymick@aol.com
Website: http://www.hearinglosscapecod.org

Central Massachusetts Chapter:
Northborough Public Library
34 Main St.
Northborough, MA 01532
Contact: Margaret Myatt
Phone: (508) 498-3724
Email: info@hearinglosscentralma.org
Additional Contact: Beth Wilson
Phone: (508) 393-1435
Email: wilsondrbeth@aol.com
Website: https://hearinglosscentralma.wordpress.com/

Lucius Beebe Memorial Library
(2nd Fl. Treasurer’s Room)
345 Main St.
Wakefield, MA 01880
Contact: JoAnn Lacock
Email: jlpisces@aol.com
Phone: (603) 216-2381

Plymouth Chapter:
Contact: Sandy Spekman
Phone: 508-224-7971
Email: sspekman@gmail.com

 

Developmental Disabilities
The Arc of Massachusetts
217 South St
Waltham, MA 02453-2710
Phone: (781) 891-6270
Twitter: The Arc of Mass
Email: arcmass@arcmass.org
Website: http://www.arcmass.org

 

Diaphragmatic Hernia
Contact: Marie Marchesseault
Phone: (978) 664-2358
Email: Massachusetts@cherubs.org

 

Down syndrome
Massachusetts Down Syndrome Congress
Burlington, MA
Phone: (800) 664-6372
Email: mdsc@mdsc.org
Website: http://www.mdsc.org

Berkshire County ARC Down Syndrome Family Group
Pittsfield, MA
Phone: (413) 464-7262
Email: mtiffany@bcarc.org

Down Syndrome Resource Group of Western MA
Springfield, MA
Phone: (800) 536-2910, (413) 794-8342
Email: info@dssupport.org
Website: http://www.dssupport.org

 

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

 

Edwards syndrome
Contact: Michael and Pam Healey
Phone: (781) 862-8273, (339) 221-1113
Lexington, MA
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

 

Hydrocephalous
Boston Area:
Contact: Jennifer Miles & Sue Wiegers
Email: bostoncommunity@hydroassoc.org

 

Intellectual Disabilities
The Arc of Massachusetts
217 South St
Waltham, MA 02453-2710
Phone: (781) 891-6270
Twitter: The Arc of Mass
Email: arcmass@arcmass.org
Website: http://www.arcmass.org

 

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

 

Pierre Robin Sequence
Boston Cleft & Craniofacial Center at Mass General Hospital for Children and Shriners Hospital for Children – CPT Shriners Hospital for Children 51 Blossom St Boston, MA 02114-2601
Phone: (617) 371-4730
Fax: (617) 371-4827
Team Leader: Eric C. Liao, MD, PhD
Coordinator: Kathy Hannigan, RN, BSN
Patient Age Range: 0-21
Email: khannigan@shrinenet.org
Website: http://www.shrinershospitalsforchildren.org/en/Locations/boston/Care/CleftLipPalate

Boston Cleft Lip and Palate Clinic at Tufts Medical Center – CPT
800 Washington St # 850
Boston, MA 02111-1552
Phone: (617) 636-2820
Fax: (617) 636-1479
Team Leader: Andrew R. Scott, MD, FACS
Coordinator: Cattleya May, NP
Patient Age Range: 0-50
Email: cleftteam@tuftsmedicalcenter.org
Website: http://www.floatinghospital.org/cleft

Boston Craniofacial Centre – CPT, CFT
Boston Children’s Hospital
300 Longwood Ave
Boston, MA 02115-5724
Phone: (617) 355-6309
Fax: (617) 738-1657
Patient Age Range: 0-21
Team Leader: John Butler Mulliken, MD
Coordinator: Samantha Hall
Email: samantha.hall@childrens.harvard.edu
Website: http://www.childrenshospital.org/clinicalservices/Site1858/mainpageS1858P0.html

Springfield Cleft Lip and Palate Clinic – CPT
Shriners Hospital for Children-Springfield
516 Carew St
Springfield, MA 01104-2396
Phone: (413) 787-2027
Fax: (413) 787-2012
Patient Age Range: 0-21
Team Leader: Philip B. Stoddard, MD
Coordinator: Teresa Lynch, RN; Elizabeth Starzyk, RN
Email: pstoddard@shrinenet.org
Website: http://www.shrinershospitalsforchildren.org/springfield

Worcester UMMHC Craniofacial Clinic – CPT UMMHC Hahnemann Campus
281 Lincoln St Plastic Surgery
Worcester, MA 01605-2192
Phone: (508) 793-5347
Fax: (508) 334-5152
Patient Age Range: 0-99
Team Leader: Janice F. Lalikos, MD, MA
Coordinator: Holly O’Neil
Email: holly.oneil@umassmemorial.org
Website: http://www.umassmemorial.org/craniofacial

 

Polymicrogyria
Montgomery County:
Contact: Esther and Benny Hutman
Email: estherhutman@gmail.com

 

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

 

Spina Bifida
SBA of Greater New England
219 East Main St Suite 100B
Milford, MA 01757
Phone: 508-482-5300
Email: edugan@SBAGreaterNE.org
Website: http://www.SBAGreaterNE.org

 

Tessier Cleft
Boston Cleft & Craniofacial Center at Mass General Hospital for Children and Shriners Hospital for Children – CPT Shriners Hospital for Children 51 Blossom St Boston, MA 02114-2601
Phone: (617) 371-4730
Fax: (617) 371-4827
Team Leader: Eric C. Liao, MD, PhD
Coordinator: Kathy Hannigan, RN, BSN
Patient Age Range: 0-21
Email: khannigan@shrinenet.org
Website: http://www.shrinershospitalsforchildren.org/en/Locations/boston/Care/CleftLipPalate

Boston Cleft Lip and Palate Clinic at Tufts Medical Center – CPT
800 Washington St # 850
Boston, MA 02111-1552
Phone: (617) 636-2820
Fax: (617) 636-1479
Team Leader: Andrew R. Scott, MD, FACS
Coordinator: Cattleya May, NP
Patient Age Range: 0-50
Email: cleftteam@tuftsmedicalcenter.org
Website: http://www.floatinghospital.org/cleft

Boston Craniofacial Centre – CPT, CFT
Boston Children’s Hospital
300 Longwood Ave
Boston, MA 02115-5724
Phone: (617) 355-6309
Fax: (617) 738-1657
Patient Age Range: 0-21
Team Leader: John Butler Mulliken, MD
Coordinator: Samantha Hall
Email: samantha.hall@childrens.harvard.edu
Website: http://www.childrenshospital.org/clinicalservices/Site1858/mainpageS1858P0.html

Springfield Cleft Lip and Palate Clinic – CPT
Shriners Hospital for Children-Springfield
516 Carew St
Springfield, MA 01104-2396
Phone: (413) 787-2027
Fax: (413) 787-2012
Patient Age Range: 0-21
Team Leader: Philip B. Stoddard, MD
Coordinator: Teresa Lynch, RN; Elizabeth Starzyk, RN
Email: pstoddard@shrinenet.org
Website: http://www.shrinershospitalsforchildren.org/springfield

Worcester UMMHC Craniofacial Clinic – CPT UMMHC Hahnemann Campus
281 Lincoln St Plastic Surgery
Worcester, MA 01605-2192
Phone: (508) 793-5347
Fax: (508) 334-5152
Patient Age Range: 0-99
Team Leader: Janice F. Lalikos, MD, MA
Coordinator: Holly O’Neil
Email: holly.oneil@umassmemorial.org
Website: http://www.umassmemorial.org/craniofacial

 

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

 

Turner’s syndrome
Cardiology:
​Dr. Ami Bhatt Pediatric Cardiology
8 Hawthorne Pl. #110
Boston, Massachusetts 2114
Phone: (617) 726-8510 ​

Dr. Angela Lin Cardiology and Genetics
55 Fruit St.
Boston, Massachusetts 2090
Phone: (617) 726-1561 ​

Endocrinology:
Dr. Frances Hayes Reproductive Endocrinology
55 Fruit St.
Boston, Massachusetts 2114
Phone: (617) 726-8433

Dermatology:
Dr. Ira Skolnik, MD
Dermatology 747 Main St. Suite #212
Concord, Massachusetts 1742
Phone: (978) 369-7701

 

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 Moms of Massachusetts, Autism Awareness in Massachusetts,
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 Berkshire County, United Cerebral Palsy of MetroBoston 
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 of Massachusetts
Diaphragmatic Hernia: Massachusetts Cherubs- Congenital Diaphragmatic Hernia Charity 
DiGeorge syndrome: DiGeorge Syndrome, 22q11.2 Deletion, DiGeorge, VCFS etc
Down syndrome: Down Syndrome Alabama- Parents & Caretakers, Down Syndrome Alabama
Dwarfism: Dwarfism, Little People of the World Organization,
Edwards syndrome: edwards syndrome (trisomy18), Edwards Syndrome Families & Support – Trisomy 18, Trisomy 18 Foundation Parents Connect
Encephalocele: Encephalocele Parent Support, Encephalocele Support
Epilepsy: Massachusetts Pediatric Epilepsy Support Group,
Hydrocephalus: State of Massachusetts Hydrocephalus Association Community Network
Hydrops Fetalis: Hydrops Fetalis Support Group, Hydrops Fetalis Parents Support Group
Intellectual Disability: Intellectual Disabilities Support GroupThe Arc of Massachusetts
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: Spina Bifida Association of Greater New England
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

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.

Fill out my online form.
WordPress Video Lightbox Plugin