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The following information is taken from the Rare Disease Information Directory, which is published by the Consortium on Rare Diseases. The directory is intended as a starting point for individuals seeking various types of information about rare diseases and disorders. The list is not exhaustive, but the organizations identified are felt to have broad expertise. For example, the National Organization for Rare Disorders (NORD), which is an umbrella organization for rare disease voluntary groups, is included, but each of the 130+ organizations that are members of NORD are not listed. If one starts with this list, a few phone calls or hypertext links should locate the specific information that is sought.
Alliance of Genetic Support Groups
4301 Connecticut Ave., N.W.
Suite 404
Washington, D.C. 20008-2304
(202) 966-5557 or (800) 336-GENE
FAX (202) 966-8553
Email: info@geneticalliance.org
www.geneticalliancce.org
Alliance is a bridge between consumers and service providers. A flourishing coalition of voluntary genetic support groups, consumers and professionals, Alliance serves as a forum for addressing the needs of individuals and families affected by genetic disorders from a national and cross disability perspective.
Biotechnology Industry Organizaion (BIO)
1225 I Street NW, Suite 400
Washington, DC 2005
(202) 962-9200
FAX (202) 962-9201
E-mail: bio@bio.org
www.bio.org
The Biotechnology Industry Organization (BIO) is the largest trade organization to serve and represent the emerging biotechnology in the United States and around the globe.
March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
(914) 428-7100
www.modimes.org
The March of Dimes is a nonprofit organization dedicated to improving the health of babies by reducing birth defects and infant mortality.
National Library of Medicine
8600 Rockville Pike, Bldg. 38
Bethesda, MD 20894
(301) 496-6095 or (800) 272-4787
www.nlm.nih.gov
NIH National Library of Medicine database of Clinical Trials
The U.S. National Institutes of Health, through its National Library of Medicine, has developed the clinical trials database to provide patients, family members and members of the public current information about clinical research studies.
National Center for Education
in Maternal and Child Health
2115 Wisconsin Avenue, NW
Suite 601
Washington, DC 20007
(202) 784-9777
www.ncemch.georgetown.edu
NCEMCH provides information services, technical assistance, and educational materials to organizations, agencies, and individuals with an interest in maternal and child health (MCH). NCEMCH maintains a reference collection of policy papers, agency reports, conference proceedings, annuals, guidelines, sample consumer education materials, curricula, and materials on the history of MCH services.
National Institutes of Health
9000 Rockville Pike
Bethesda, MD 20892
General Information: (301) 496-4000
www.nih.gov
National Marfan Foundation/Coalition for
Heritable Disorders of Connective Tissue (NMF)
22 Manhasset Avenue
Port Washington, NY 11050
(516) 883-8040
www.marfan.org
The goals of the CHDCT are to bring about greater awareness and understanding of heritable disorders of connective tissue in medical professions and in the public at large; to encourage teaching in the schools, to train health practitioners to help identify, diagnose, and treat heritable connective tissue disorders; and to foster research.
National Organization for Rare Disorders
(NORD)
55 Kenosia Avenue
P. O. Box 1968
Danbury, CT 06813-1968
(800) 999-NORD(6673) or (203) 744-0100
TDD Number (203) 797-9590
E-mail: orphan@rarediseases.org
Fax: (203) 798-2291
www.rarediseases.org
The National Organization for Rare Disorders is the federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Office of Rare Diseases
Office of Rare Diseases
National Institutes of Health
6100 Executive Boulevard, 3B-01
Bethesda, Maryland 20892–7518
Telephone: (301) 402–4336
Fax: (301) 480–9655
ord@od.nih.gov
The Office of Rare Diseases (ORD) was established in 1993 within the Office
of the Director of the National Institutes of Health (NIH). On November 6,
2002, the President established the Office in statute (Public Law 107-280,
the Rare Diseases Act of 2002). The goals of ORD are to stimulate and coordinate
research on rare diseases and to support research to respond to the needs of
patients who have any one of the more than 6,000 rare diseases known today
The Oley Foundation
(Home Parenteral & Enteral Nutrition)
214 Hun Memorial, A-28
Albany Medical Center
Albany, NY 12208-3478
(Special Foods and Dietary Needs)
1-800-776-OLEY (Toll Free In USA & Canada)
1-518-262-5079 (Outside USA)
Fax: 1-518-262-5528
E-mail:bishopj@mail.amc.edu
The Oley Foundation is a nonprofit organization founded in 1983 devoted to enriching and enhancing the lives of those requiring home nutrition support through the development of a "homePEN community" centered on homePEN consumers and their families.
Pharmaceutical Research and Manufacturers
of America (PhRMA)
1100 15th Street, NW
Washington, DC 20005
(202) 835-3400
1-800-762-4636 Patient Assistance Program
www.phrma.org
The mission of the Pharmaceutical Research and Manufacturers of America is
to help the research-based pharmaceutical industry successfully meet its goal
of discovering, developing, and bringing to market medicines to improve human
health, patient satisfaction, and the quality of life around the world, as
well as to reduce the overall cost of healthcare.