“Voluntary, lay genetic support groups have become important providers of supportive, educational, and social services for clients and families who face genetic disorders.” - Rita Beck Black and Sylvia Schild 1988

www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=3344770&dopt=Abstract

National Support Groups

Genetic Alliance, Inc.
The Genetic Alliance is your portal to learning about genetic support groups as well as locating disease specific information. Sharon Terry is CEO and President.
http://www.geneticalliance.org/
Main office: (202) 966-5557
Fax: (202) 966-8553
info@geneticalliance.org

National Organization for Rare disorders.
They are a “ federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them." This organization makes available an extensive database of rare diseases and affiliated organizations.

http://www.rarediseases.org/
55 Kenosia Avenue
PO Box 1968
Danbury , CT 06813-1968
(203) 744-0100
Tollfree: (800) 999-6673 (voicemail only)
TDD Number: (203) 797-9590
Fax:(203)798-2291
orphan@rarediseases.org

Note:
Nine brochures are available on line to print and offer your patients:
The Pediatrician's Guide to Tyrosinemia Type I, The Pediatrician's Guide to Ornithine Transcarbamylase Deficiency...and other Urea Cycle Disorders, The Physician's Guide to Primary Lateral Sclerosis, The Physician's Guide to Pompe Disease , The Physician's Guide to Multiple System Atrophy, and The Physician's Guide to Hereditary Ataxia, Giant Hypertrophic Gastritis and Menetrier's Disease , The Physician's Guide to Amyloidosis and The Physician's Guide to Medullary Thyroid Cancer . http://www.rarediseases.org/programs/freebooklets

Support Groups in US and International for Chromsome Disorders http://www.kumc.edu/gec/support/chromoso.html

Bloom's Syndrome
Bloom's Syndrome Registry
c/o Laboratory of Human Genetics
The New York Blood Center
310 East 67th St
New York, NY 10021
Contact: James L. German, III, MD
Tel: 212-570-3075
FAX: 212-570-3195

Cardiac-Heart

Children's Heart Fund
One Gustave Levy Place
PO Box 1201
New York , NY 10029
Contact : Suzanne Zimmerer
Phone: 212-241-8668

Circle of Hearts
P.O.Box 662
Kenmore , N.Y. 14217-0662
Contact : info@cohearts.org

Big Hearts for Little Hearts
34 Sintsink Drive West
Port Washington , NY 11050
Contact : Ruth Maszrik
Phone: 516-883-4080  

Helping Hearts, Inc.
601 Elmwood Avenue
P.O. Box 631
Rochester , NY 14642
Phone: (716) 275-6108
Email : info@helpinghearts.org

Hope for Hearts, Inc.
Children's Medical Center
Stony Brook University Hospital
Stony Brook, NY 11790-8111
Contact : Rose Weiss
Phone: 631-499-4476

Mend-A-Heart Support Group
New York , NY

Cardiac Kids
PO Box 154
Fishkill , NY 12524-0154
Contact: Cindy-Jean Dennis
Phone: 845-896-7321

 Chromosome Condition :
(Support Organization for Trisomy 18, 13, other)

Support Organization for Trisomy 18, 13 and Related Disorders
2982S Union St. , Rochester , NY 14624
Phone: 716.594.4621
Web site: www.trisomy.org/
Guide for professionals

Association for Children with Down Syndrome
2616 Martin Avenue , Bellmore , NY 11710-3169
Phone: 516.221.4700 - Fax: 516.221.4311
Web site: www.acds.org/

National Down Syndrome Society
666 Broadway, New York , NY 10012-2317
Phone: 800.221.4602 or 212.460.9330
Fax: 212.979.2873
Web site: www.ndss.org/
Mosaic Down Syndrome (MDS)Page

Parent Assistance Committee on Down Syndrome
208 Lafayette Avenue , Peekskill , NY 10566
Phone: 914.739.4085

Dysautonomia

Dysautonomia Foundation, Inc.
633 Third Ave - 12th Floor
New York , NY 10017
Tel: 212-949-6644
FAX: 212-682-7625
http://www.familialdysautonomia.org

Epidermolysis Bullosa

Dystrophic Epidermolysis Bullosa
Research Association of America
(D.E.B.R.A. of America, Inc.)
141 Fifth Ave
New York , NY 10010
Contact: Miriam Feder
Tel: 212-995-2220

Hemochromatosis

Hemochromatosis Research Foundation
P.O. Box 8569
Albany , NY 12208
Contact: Margit Krikker, MD
Tel: 518-489-0972
FAX: 518-489-0227

Human Growth Foundation
997 Glen Cove Avenue, Suite 5
Glen Head , NY 11545
Phone: 1–800–451–6434
Fax: 516–671–4055
Email: hgf1@hgfound.org
Internet: www.hgfound.org

 Incontinentia Pigmenti
National Inconitentia Pigmenti Foundation
41 East 57th St , 5th floor
New York , NY 10022
Contact: Susanne B. Emmerich
Tel: 212-207-4636
Fax: 212-371-7345
http://www.medhelp.org/www/nipf.htm

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains , NY 10605
Phone: 914–997–4488 or 1–888–MODIMES
Fax: 914–428–8203
Email: askus@marchofdimes.com
Internet: www.marchofdimes.com

Marfan's Syndrome
National Marfan Foundation
382 Main St
Port Washington , NY 11050
Tel: 516-883-8712
800-8-MARFAN
FAX: 516-883-8712

Muscular Dystrophy
Muscular Dystrophy Association
342 Madison Ave
Room 1426
New York , NY 10173
Tel: 212-557-8450

National Neurofibromatosis Foundation
95 Pine St - 16th Floor
New York , NY 10005
Contact: Peter R.W. Bellerman
Tel: 212-344-NNFF/6633 or 800-323-7938
FAX: 212 747-0004
http://nf.org/

National Congenital Port Wine Stain Foundation
123 East 63rd St
New York , NY 10021
Tel: 516-867-5137
FAX: 516-869-1278

National Adrenal Diseases Foundation
505 Northern Boulevard
Great Neck , NY 11021
Phone: 516–487–4992
Email: NADFmail@aol.com
Internet: www.nadf.us/

Oxalosis and Hyperoxaluria Foundation
201 East 19th Street, Suite 12E
New York , NY 10003
Phone: 212–777–0470 or 1–800–OHF–8699
Fax: 212–777–0471
Email: kimh@ohf.org
Internet: www.ohf.org

The Paget Foundation for Paget's Disease of Bone and Related Disorders
120 Wall Street, Suite 1602
New York , NY 10005–4001
Phone: 1–800–23–PAGET or 212–509–5335
Fax: 212–509–8492
Email: PagetFdn@aol.com
Internet: www.paget.org

Scleroderma Society
1725 York Ave
Suite 29-F
New York , NY 10128
Contact: Mark Flagan, PhD., President
Tel: 212-427-7040

National Self Help Clearinghouse
33 West 42nd St
Room 620-N
New York , NY 10036
Contact: Audrey Garnter
Tel: 212-840-1259

Sjögren's Syndrome Foundation, Inc.
333 North Broadway - Suite 2000
Jericho , NY 11753
Tel: 516-933-6365 Or 1-800-4 Sjogren
Fax: 516-933-6368
http://www.sjogrens.org/

Xeroderma Pigmentosum Society
57 Sleight Plass Rd
Poughkeepsie , N.Y. 12603
Contact: Mrs. Caren J. Mahar
Tel: 914-473-4735
http://www.xps.org

 

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