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Alpha-1 Advocacy Alliance, Wolftown, VA
Alpha-1 Foundation, Miami, FL
Alpha-1 Association, Washington DC
Alpha-1 VOICE, Evansville, IN
Alstrom Syndrome International, Mt Desert, ME
American Association for the Study of Liver Disease, Alexandria, VA
American Association on Mental Retardation, Washington, DC
American Hemochromatosis Society, Lake Mary, FL
Angioma Alliance, Williamsburg, VA
ARPKD/CHF Alliance, Kirkwood, PA
Association of Women¹s Health, Obstetric and Neonatal Nurses, Washington, DC
Athena Diagnostics, Worchester, MA
BCCNS Life Support Network, Burton, OH
Behcets Organisation Worldwide, Somerset, UK
BPEI Family Network, Pullman, WA
Brotherhood of Maintenance of Way Employees (BMWE), Washington, DC
Canavan Foundation, New York, NY
Cardiac Arrhythmias Research & Education (C.A.R.E.) Foundation, Inc., Irvine, CA
Cardio-Facio-Cutaneous Family Network, Inc., Vestal, NY
CARES Foundation, Inc., Short Hills, NJ
Caring Voice Coalition, Meridian, ID
Chromosome 18 Registry and Research Society, San Antonio, TX
Cleft Palate Foundation, Chapel Hill, NC
Coalition of Heritable Disorders of Connective Tissue, Washington, DC
Committee of Ten Thousand, Washington, DC
Cooley’s Anemia Foundation, Flushing, NY
Cornelia de Lange Syndrome Foundation, Inc., Avon, CT
Council for Responsible Genetics, Cambridge, MA
CUTIS LAXA INTERNATIONALE, Sainte Marie de Re, France
Cystinosis Foundation, Oakland, CA
Cystinosis Research Network, Burlington, MA
Ehlers-Danlos National Foundation, Los Angeles, CA
Ellis Van Creveld Support Group, Honeoye Falls, NY
EP ("Exceptional Parent"), River Edge, NJ
FACES: The National Craniofacial Association, Chattanooga, TN
Families of Spinal Muscular Atrophy, Libertyville, Illinois
FOD Family Support Group, Greensboro, NC
Freeman-Sheldon Parent Support Group, Salt Lake City, Utah
Genetic Alliance, Washington, DC
Gilda Radner Familial Ovarian Cancer Registry, Buffalo, NY
Gluten Intolerance Group, Seattle, WA
Hadassah, New York City, NY
Health Privacy Project, Washington, DC
Hemophilia Federation of America, Lafayette, LA
Hermansky-Pudlak Syndrome Network Inc., Oyster Bay, NY
HHT Foundation International, Inc., New Haven, CT
Huntingtons Disease Society of American, New York, NY
Huntingtons Disease Society of America- Michigan Chapter, Midland, MI
Hypertrophic Cardiomyopathy Association, Hibernia, NJ
Idaho Alpha-1 Community Outreach, Boise, Idaho
Immune Deficiency Foundation, Towson, MD
ican (International Children’s Anophthalmia Network), Philadelphia, PA
Incontinentia Pigmenti International Foundation, New York, NY
International Association of Behavioral Genetic Specialists and Interns,
    Mountain Home Air Force Base, ID
International Costello Syndrome Support Group, Manchester, UK
International Joseph Diseases Foundation, Redding, CA
International Mosaic Down Syndrome Association, Franklin, TX
International Society for Mannosidosis & Related Diseases, Inc., Baltimore, MD
Iron Disorders Institute, Inc., Greenville, SC
IsoDicentric 15 Exchange, Advocacy & Support, Portland, OR
International Society of Nurses in Genetics (ISONG), Newton, IA
Jeffrey Modell Foundation, New York, NY
Joubert Syndrome Foundation, Columbia, MD
Kids With Heart National Assn for Children’s Heart Disorders, Green Bay, WI
Longevity Labs Inc, Portland, OR
Lymphatic Research Foundation, Roslyn, NY
Lynn Family Forum, Lynn, MA
March of Dimes, White Plains, NY
Nail Patella Syndrome Networking/Support Group, Holland, PA
Nail-Patella-Syndrome Worldwide, Royal Oak, MI
National Alopecia Areata Foundation, San Rafael, CA
National Coalition for PKU & Allied Disorders, Mansfield, MA
National Eczema Association for Science and Education, San Rafael, CA
National Foundation for Ectodermal Dysplasias, Mascoutah, IL
National Gaucher Foundation, Rockville, MD
National Marfan Foundation, Port Washington, NY
National Partnership for Women and Families, Washington, DC
National Society of Genetic Counselors, Wallingford, PA
National Tay-Sachs & Allied Diseases Association ­ NTSAD, Boston, MA
NERGG, Inc., Newton, MA
NBIA Disorders Association, El Cajon, CA
Neurofibromatosis, Inc., Lanham, MD
OI council of GA, Decatur, GA
Osteogenesis Imperfecta Foundation, Gaithersburg, MD
Parkinson¹s Disease Foundation, New York, NY
Pediatric/Adolescent Gastroesophageal Reflux Association, Inc., Germantown, MD
Periodic Paralysis Association, Monrovia, CA
PND Association, (Pediatric Neurotransmitter Disease), Plainview, NY
Positive Exposure, New York, NY
PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome),
    Richardson, TX
Project DOCC - Delivery of Chronic Care, Oyster Bay, NY
Psychiatric Service Dog Society
Purine Research Society, Bethesda, MD
PXE International, Washington, DC
Ramazzini Institute, Solomon¹s Island, MD
Rett Syndrome Research Foundation, Cincinnati, OH
SADS Foundation, Orchard Lake, MI
Save Babies Through Screening Foundation, Inc., Somerset, PA
Sickle Cell Disease Association of America, Inc., Culver City, California
Sjogren’s Syndrome Foundation, Bethesda, MD
SJS Foundation, Westminster, CO
Stickler Involved People, Augusta, KS
Sudden Arrhythmia Death Syndromes (SADS) Foundation, Salt Lake City, UT
The Barth Syndrome Foundation, Inc., Perry, FL
The American Association of Multiple Enchondroma Diseases, Venice, Florida
The Association of Genetic Support of Australasia (AGSA) Inc., Surry Hills, Australia
THE BRAINPOWER PROJECT, Agoura Hills, CA
The Citizens for Quality Sickle Cell Care, Inc, New Britain, CT
The Genome Action Coalition (TGAC)
The Premature Ovarian Failure Support Group, Inc., North Hollywood, CA
The Progeria Research Foundation, Inc., Peabody, MA
The XLH Network, Bowie, MD
Transgenomic, Omaha, NE
Tuberous Sclerosis Alliance, Silver Spring, MD
Virginia’s Tyrosinemia Group, Keeling, VA
Wilson’s Disease Association, Wooster, OH
Xeroderma Pigmentosum Society, Craryville, N.Y.

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Updated May 25, 2005