Directory of Endocrine and Metabolic Diseases Organizations
This directory lists Government agencies and professional and voluntary associations that provide endocrine and metabolic diseases-related information and resources. Some of these organizations offer educational materials and other services to patients and the general public, while others primarily serve health care professionals
American Association of Clinical Endocrinologists (AACE)
245 Riverside Avenue, Suite 200
Jacksonville, FL 32202
Phone: 904–353–7878
Fax: 904–353–8185
Internet: www.aace.com
Mission: To provide a professional community of clinical endocrinologists that is committed to transforming the lives of patients by enabling one another to practice leading-edge, proactive, ethical, and cost-effective medicine.
Materials: Endocrine Practice (journal); The First Messenger (newsletter); practice guidelines.
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The American Porphyria Foundation (APF)
4900 Woodway, Suite 780
Houston, TX 77056–1837
Phone: 1–866–APF–3635 (1–866–273–3635) or 713–266–9617
Fax: 713–840–9552
Email: porphyrus@aol.com
Internet: www.porphyriafoundation.com
Mission: To enhance public awareness about porphyria, develop and distribute educational materials for patients and physicians, and support research to improve treatment and lead to a cure. The APF also serves as an advocate to other public, private, and government agencies interested in funding research and educational programs.
Materials: Acute Intermittent Porphyria, Porphyria Cutanea Tarda (PCT), ALAD Porphyria (ADP), Hepatoerythropoietic Porphyria (HEP), Hereditary Coproporphyria (HCP), Variegate Porphyria (VP), and Erythropoietic Protoporphyria (EPP) (informational brochures); newsletter.
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American Society for Bone and Mineral Research (ASBMR)
2025 M Street NW, Suite 800
Washington, DC 20036
Phone: 202–367–1161
Fax: 202–367–2161
Email: asbmr@asbmr.org
Internet: www.asbmr.org
Mission: To promote excellence in bone and mineral research, foster integration of clinical and basic science, and facilitate the translation of that science to health care and clinical practice.
Materials: Journal of Bone and Mineral Research (monthly journal); Primer on the Metabolic Bone Diseases and Disorders of Mineral Metabolism (6th edition); ASBMR e-news (monthly e-newsletter).
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American Society of Human Genetics (ASHG)
9650 Rockville Pike
Bethesda, MD 20814
Phone: 1–866–HUM–GENE (1–866–486–4363) or 301–571–1825
Email: society@ashg.org
Internet: www.ashg.org
Mission: To promote and expand research, apply knowledge to enhance health care, train the next generation of professionals, and educate and inform the public about genetics.
Materials: American Journal of Human Genetics (monthly journal); Enhancement of K–12 Human Genetics Education: Creating a Cooperative Plan; Guide to Human Genetics Training Programs.
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American Thyroid Association (ATA)
6066 Leesburg Pike, Suite 550
Falls Church, VA 22041
Phone: 1–800–THYROID (1–800–849–7643) or 703–998–8890
Fax: 703–998–8893
Email: thyroid@thyroid.org
Internet: www.thyroid.org
Mission: To provide outstanding leadership in thyroidology by promoting excellence and innovation in clinical care, research, education, and public policy.
Materials: Informational pamphlets; Thyroid (monthly journal); Clinical Thyroidology (summaries of published thyroid studies, published three times a year); The Signal (newsletter for members, published three times a year).
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Association for Glycogen Storage Disease (AGSD)
P.O. Box 896
Durant, IA 52747
Phone: 563–785–6038
Email: maryc@agsdus.org
Internet: www.agsdus.org
Mission: To serve as a parent- and patient-oriented support group, increase public awareness of glycogen storage disease (GSD), stimulate research in the various forms of GSD, and disseminate results to parents, patients, and the public.
Materials: The Ray (periodic newsletter); Parent Handbook; other brochures.
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Congenital Adrenal Hyperplasia Research Education and Support (CARES) Foundation
2414 Morris Avenue
Union, NJ 07083
Phone: 1–866–227–3737 or 973–912–3895
Internet: www.caresfoundation.org
Mission: To improve the lives of families and patients affected by congenital adrenal hyperplasia (CAH) by proactively advancing research for a cure, educating the public and health care professionals about all forms of CAH, advocating for universal newborn screening, and providing support services and resources vital to the CAH community worldwide.
Materials: Newsletters; brochures; newborn screening packets.
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Cushing’s Support and Research Foundation (CSRF)
65 East India Row, 22B
Boston, MA 02110
Phone: 617–723–3674
Email: cushinfo@csrf.net
Internet: www.csrf.net
Mission: To provide information and support for patients and their families, increase awareness and educate the public about Cushing’s disease and Cushing’s syndrome, be a resource for information and support to health care professionals, and raise and distribute funds for Cushing’s disease and Cushing’s syndrome research.
Materials: Quarterly newsletter; networking contacts list; CSRF Special Newsletter with personal stories; brochures; fact sheets; listings of Cushing’s specialists by state.
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Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
Phone: 1–800–FIGHT–CF (1–800–344–4823) or 301–951–4422
Fax: 301–951–6378
Email: info@cff.org
Internet: www.cff.org
Mission: To develop more therapies that will extend and enhance the lives of those with cystic fibrosis (CF) and to find a cure or control for CF.
Materials: Informational brochures; videos.
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Endocrine Society
8401 Connecticut Avenue, Suite 900
Chevy Chase, MD 20815–5817
Phone: 1–888–363–6274 or 301–941–0200
Fax: 301–941–0259
Email: societyservices@endo-society.org
Internet: www.endo-society.org
Mission: To promote excellence in research, education, and the clinical practice of endocrinology; to foster a greater understanding of endocrinology among the general public and practitioners of complementary medical disciplines; and to promote the interests of all endocrinologists at the national scientific research and health policy levels of Government.
Materials: Endocrine Reviews, Endocrinology, The Journal of Clinical Endocrinology and Metabolism, and Molecular Endocrinology (journals); Molecular and Cellular Research Syllabi, Program and Abstracts Book, Recent Progress in Hormone Research Conference Proceedings, Clinical Endocrinology Update Syllabi, Remembrances in Endocrinology, and Endocrine Reviews Monograph Series (books); Endocrine News (monthly magazine).
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Fatty Oxidation Disorders (FOD) Family Support Group
Deb Lee Gould, M.Ed.
2041 Tomahawk
Okemos, MI 48864
Phone: 517–381–1940
Fax(United States/Canada) 1–866–290–5206
Fax(Overseas) 313–432–5928
Email: deb@fodsupport.org
Internet: www.fodsupport.org
Mission: To connect and network with fatty oxidation disorders (FOD) families and professionals around the world and to provide emotional support, family stories, practical information about living with these disorders, and medical updates to inform families of new developments in screening, diagnosis, research, and treatment.
Materials: FOD Communication Network (biannual newsletter) for families and professionals.
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The Genetic Alliance
4301 Connecticut Avenue, NW Suite 404
Washington, DC 20008–2369
Phone: 1–800–336–GENE (4363) or 202–966–5557
Fax: 202–966–8553
Email: info@geneticalliance.org
Internet: www.geneticalliance.org
Mission: To increase the capacity of genetic advocacy organizations to achieve their missions and leverage the voices of millions of individuals and families living with genetic conditions.
Materials: Newsletter; general brochure; Bibliography of Material on Basic Genetics and DNA Technology for the General Public, Directory of National Genetic Voluntary Organizations, Integrating Consumers into Regional Genetics Networks, Informed Consent—Participation in Genetic Research Studies, Media Reporting in the Genetic Age, and Starting a Support Group (brochures).
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Graves’ Disease Foundation (GDF)
400 International Drive
Williamsville, NY 14221
Phone: 1–877–643–4123 or 716–631–2310
Fax: 716–631–2822
Email: gravesdiseasefd@gmail.com
Internet: www.ngdf.org
Mission: To provide medical information, referrals, and resources to patients; aid in the development of support groups; provide professional education through lectures and forums; and foster research on Graves’ disease.
Materials: Informational brochures; periodic bulletins.
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The Hormone Foundation
8401 Connecticut Avenue, Suite 900
Chevy Chase, MD 20815–5817
Phone: 1–800–HORMONE (1–800–467–6663)
Fax: 301–941–0259
Email: hormone@endo-society.org
Internet: www.hormone.org
Mission: To serve as a resource for the public by promoting the prevention, treatment, and cure of hormone-related conditions through outreach and education. The Hormone Foundation is the public education affiliate of the Endocrine Society.
Materials: Patient fact sheets; brochures; Recognition and Treatment of Pituitary Hormone Imbalances (video/webcast).
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Human Growth Foundation (HGF)
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
Mission: To support families of children with physical growth problems and to help medical science better understand the process of growth. The HGF distributes funds for basic and clinical growth research.
Materials: Fourth Friday (quarterly newsletter); Growth Series (brochures).
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Hypoglycemia Support Foundation, Inc. (HSF)
P.O. Box 451778
Sunrise, FL 33345
Phone: 954–742–3098
Email: rruggiero@hypoglycemia.org
Internet: www.hypoglycemia.org
Mission: To inform, direct, support, and encourage people with hypoglycemia.
Materials: The Blood Sugar Hotline (CD); Hypoglycemia: Millennium Update (audiotapes); The Health Emergency Card; The Do’s and Don’ts of Hypoglycemia (book); Seven Day Diet Menu.
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Iron Overload Diseases Association (IOD)
P.O. Box 15857
West Palm Beach, FL 33416
Phone: 1–866–768–8629 or 561–586–8246
Fax: 561–586–8248
E-mail: iod@ironoverload.org
Internet: www.ironoverload.org
Mission: To conduct professional education symposia and exhibits at medical meetings; serve and counsel patients with hemochromatosis and their families; offer doctor referrals; promote patient advocacy concerning insurance, Medicare, blood banks, and the U.S. Food and Drug Administration; encourage research; maintain an international clearinghouse; offer public information through the media; develop chapters and self-help groups; and sponsor annual symposia and IOD Awareness Week.
Materials: Overload: An Ironic Disease (booklet); Ironic Blood (bimonthly newsletter); Iron Overload Alert (informational brochure); fact sheets.
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The Magic Foundation
6645 West North Avenue
Oak Park, IL 60302
Phone: 1–800–3–MAGIC3 (1–800–362–4423) or 708–383–0808
Fax: 708–383–0899
Email: dianne@magicfoundation.org
Internet: www.magicfoundation.org
Mission: To provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes, and diseases that affect a child’s growth.
Materials: Educational brochures; The MAGIC Touch (quarterly newsletter); The MAGIC Star (quarterly newsletter for adults with growth hormone deficiency); newsletter for affected children; National Pen Pal program.
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March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
Phone: 1–888–MODIMES (1–888–663–4637) or 914–997–4488
Fax: 914–428–8203
Email: askus@marchofdimes.com
Internet: www.marchofdimes.com
Mission: To improve the health of babies by preventing birth defects, premature birth, and infant mortality through research, community services, education, and advocacy.
Materials: Educational materials about prenatal care, birth defects, and prematurity; nursing modules; monthly newsletter; newborn screening recommendations.
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National Adrenal Diseases Foundation (NADF)
505 Northern Boulevard
Great Neck, NY 11021
Phone: 516–487–4992
Email: NADFmail@aol.com
Internet: www.nadf.us
Mission: To provide support, information, and education to individuals with Addison’s disease and other diseases of the adrenal glands.
Materials: NADF Newsletter (quarterly newsletter); educational materials.
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National Diabetes Information Clearinghouse (NDIC)
1 Information Way
Bethesda, MD 20892–3560
Phone: 1–800–860–8747
TTY: 1–866–569–1162
Fax: 703–738–4929
Email: ndic@info.niddk.nih.gov
Internet: www.diabetes.niddk.nih.gov
Mission: To serve as a diabetes information, education, and referral resource for health professionals and the public. The NDIC is a service of the NIDDK.
Materials: Educational materials about diabetes, available free or at little cost; literature searches on a variety of subjects related to diabetes; Diabetes Dateline (e-newsletter).
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National MPS Society
P.O. Box 14686
Durham, NC 27709–4686
Phone: 919–8067–0101
Fax: 919–806–2055
Email: info@mpssociety.org
Internet: www.mpssociety.org
Mission: To support families of children with mucopolysaccharidoses (MPS) and related diseases, increase professional and public awareness of the disorders, and raise funds to further research on MPS and related disorders.
Materials: Courage (quarterly newsletter); informational booklets.
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National Organization for Rare Disorders (NORD)
55 Kenosia Avenue, P.O. Box 1968
Danbury, CT 06813–1968
Phone: 1–800–999–6673 or 203–744–0100
TDD: 203–797–9590
Fax: 203–798–2291
Email: orphan@rarediseases.org or RN@rarediseases.org
Internet: www.rarediseases.org
Mission: To help people with rare “orphan” diseases and assist the organizations that serve them. The NORD is committed to the identification, treatment, and cure of rare disorders through education, advocacy, research, and service programs.
Materials: Orphan Disease Update (member newsletter); NORD Resource Guide; Physicians’ Guide to Rare Diseases; free booklets for physicians about several rare disorders.
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National Osteoporosis Foundation (NOF)
1232 22nd Street NW
Washington, DC 20037
Phone: 1–800–231–4222 or 202–223–2226
Internet: www.nof.org
Mission: To prevent osteoporosis; promote lifelong bone health; help improve the lives of those affected by osteoporosis and related fractures; and find a cure through programs of awareness, education and training, advocacy, and research.
Materials: Osteoporosis Report (quarterly newsletter); informational brochures; books; videos; other educational materials.
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National Urea Cycle Disorders Foundation (NUCDF)
4841 Hill Street
La Canada, CA 91011
Phone: 1–800–38–NUCDF (1–800–386–8233)
Fax: 818–952–2184
Email: info@nucdf.org
Internet: www.nucdf.org
Mission: To provide a primary resource of information and education to families and medical professionals and to support and stimulate research on urea cycle disorders.
Materials: Informational brochures; quarterly newsletter.
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Organic Acidemia Association, Inc. (OAA)
13210 35th Avenue North
Plymouth, MN 55441
Phone: 763–559–1797
Fax: 1–866–539–4060
Email: OAANews@aol.com
Internet: www.oaanews.org
Mission: To educate families and health care professionals about organic acidemia metabolic disorders, support early intervention through expanded newborn screening, and solicit contributions and distribute funding that supports research toward improved treatment and eventual cures for organic acid disorders.
Materials: Organic Acidemia Association Newsletter (quarterly newsletter).
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Oxalosis and Hyperoxaluria Foundation (OHF)
201 East 19th Street, Suite 12E
New York, NY 10003
Phone: 1–800–OHF–8699 (1–800–643–8699) or 212–777–0470
Fax: 212–777–0471
Email: kimh@ohf.org
Internet: www.ohf.org
Mission: To promote research to find a cure for oxalosis, primary hyperoxaluria, and related stone diseases and improve the care and treatment of those they affect.
Materials: Patient Handbook; In Touch (newsletter); website resources.
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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 (1–800–237–2438) or 212–509–5335
Fax: 212–509–8492
Email: PagetFdn@aol.com
Internet: www.paget.org
Mission: To serve patients with Paget’s disease of bone, primary hyperparathyroidism, and other related disorders. The Paget Foundation also assists the medical community that treats patients.
Materials: Quarterly newsletter; patient education brochures.
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The Pituitary Network Association (PNA)
P.O. Box 1958
Thousand Oaks, CA 91358
Phone: 805–499–9973
Fax: 805–480–0633
Email: pna@pituitary.org
Internet: www.pituitary.org
Mission: To support, pursue, encourage, promote, and, where possible, fund research on pituitary disorders in a sustained and full-time effort to find a cure for these illnesses. The PNA disseminates information about early detection, symptoms, treatments, and available resources to the medical community, the public, and pituitary patients and their families.
Materials: Network (quarterly newsletter); informational pamphlets; The Pituitary Patient Resource Guide.
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The Pituitary Society
VA Medical Center
423 East 23rd Street, Room 16048aW
New York, NY 10010
Phone: 212–263–6772
Fax: 212–447–6219
Internet: www.pituitarysociety.org
Mission: To improve the health of individuals with pituitary disorders through scientific and educational programs for patients, their families, medical students, scientists, and physicians. The Pituitary Society also encourages the development of research programs to study the biology of the pituitary and the etiology, diagnosis, pathophysiology, and treatment of pituitary disease.
Materials: Pituitary (journal); online patient education materials about the pituitary gland and specific disorders.
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Society for Inherited Metabolic Disorders (SIMD)
Leslie Lublink, SIMD Administrator
17007 Old River Drive
Lake Oswego, OR 97034
Phone: 503–636–9228
Fax: 503–210–1511
Email: lublinkl@ohsu.edu
Internet: www.simd.org
Mission: To advise the Government on the use of medical products for the treatment of inborn errors of metabolism, establish a connected group of centers for the diagnosis and treatment of patients with metabolic diseases, foster research, and ensure the availability of expertise for diagnosis and treatment of patients with inherited metabolic disorders.
Materials: Molecular Genetics & Metabolism (journal).
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United Leukodystrophy Foundation (ULF)
2304 Highland Drive
Sycamore, IL 60178
Phone: 1–800–728–5483
Fax: 815–895–2432
Email: office@ulf.org
Internet: www.ulf.org
Mission: To help children and adults with leukodystrophy and assist the family members, professionals, and support services that serve them. The ULF also supports the identification, treatment, and cure of all leukodystrophies through programs of education, advocacy, research, and service.
Materials: Fact sheets about individual leukodystrophies; ULF News (quarterly newsletter).
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Wilson’s Disease Association International (WDA)
1802 Brookside Drive
Wooster, OH 44691
Phone: 1–888–264–1450 or 330–264–1450
Fax: 330–264–0974
Email: info@wilsonsdisease.org
Internet: www.wilsonsdisease.org
Mission: To fund research and facilitate and promote the identification, education, treatment, and support of patients and other individuals affected by Wilson disease.
Materials: The Copper Connection (newsletter); informational brochures.
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National Endocrine and Metabolic Diseases Information Service
6 Information Way
Bethesda, MD 20892–3569
Phone: 1–888–828–0904
TTY: 1–866–569–1162
Fax: 1–703–738–4929
Email: endoandmeta@info.niddk.nih.gov
Internet: www.endocrine.niddk.nih.gov
The National Endocrine and Metabolic Diseases Information Service is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health (NIH), which is part of the U.S. Department of Health and Human Services.
The NIDDK conducts and supports biomedical research. As a public service, the NIDDK has established information services to increase knowledge and understanding about health and disease among patients, health professionals and the public.
Publications produced by the NIDDK are carefully reviewed by both NIDDK scientists and outside experts.
This publication is not copyrighted. The NIDDK encourages users of this publication to duplicate and distribute as many copies as desired.
May 2009
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