Skip Navigation

Introduction    Statistics    Clinical Trials, Guidelines, and Research Reports    Additional Resources    Additional Resources    About this Information Service   
dots
A to Z list of Endocrine and Metabolic Diseases topics and titles
Email to a friend  Email to a Friend icon
Print this page    Print This Page icon
Home : Resources : Directory of Endocrine and Metabolic Diseases Organizations
 

Directory of Endocrine and Metabolic Diseases Organizations

American Association of Clinical Endocrinologists (AACE)

Donald C. Jones, Chief Executive Officer
1000 Riverside Avenue, Suite 205
Jacksonville, FL 32204
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), and practice guidelines.

[Top]

The American Porphyria Foundation

4900 Woodway, Suite 780
Houston, TX 77056
Phone: 713–266–9617 or 1–866–APF–3635
Fax: 713–840–9552
Email: porphyrus@aol.com
Internet: www.porphyriafoundation.com

Mission: To enhance public awareness about porphyria, develop educational programs and distribute educational materials for patients and physicians, and support research to improve treatment and ultimately 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: Brochures, newsletter, and DVD. Bulk orders available upon request.

[Top]

American Society for Bone and Mineral Research

2025 M Street, NW, Suite 800
Washington, DC 20036
Phone: 202–367–1161
Fax: 202–367–2161
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), Primer on the Metabolic Bone Diseases and Disorders of Mineral Metabolism, 6th edition, and ASBMR e-news (monthly).

[Top]

American Society of Human Genetics

9650 Rockville Pike
Bethesda, MD 20814
Phone: 301–571–1825
Internet: www.ashg.org/genetics/ashg/ashgmenu.htm

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), Enhancement of K-12 Human Genetics Education: Creating a Cooperative Plan, and Guide to Human Genetics Training Programs.

[Top]

American Thyroid Association

For patients:
Montefiore Medical Center
111 East 210th Street, Room 311
Bronx, NY 10467
Phone: 1–800–THYROID (849–7643)
Internet: www.thyroid.org
For professionals:
6066 Leesburg Pike, Suite 550
Falls Church, VA 22041
Phone: 703–998–8890
Fax: 703–998–8893
Email: admin@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), and The Signal (newsletter for members, published three times a year).

[Top]

Association for Glycogen Storage Disease

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, and other brochures.

[Top]

Cushing's Support and Research Foundation, Inc.

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, the CSRF Special Newsletter (with personal stories), brochures, fact sheets, and Cushing’s specialists by state.

[Top]

Cystic Fibrosis Foundation

6931 Arlington Road
Bethesda, MD 20814
Phone: 301–951–4422 or 1–800–FIGHT–CF
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 ultimately to find a cure or control for CF.

Materials: Informational brochures and videos.

[Top]

Endocrine Society

8401 Connecticut Avenue, Suite 900
Chevy Chase, MD 20815–5817
Phone: 301–941–0200 or 1–888–363–6274
Fax: 301–941–0259
Email: pcorrea@endo-society.org
Internet: www.endo-society.org

Mission: To advance excellence in endocrinology and promote its essential role as an integrative force in scientific research and medical practice.

Materials: Journals include Endocrine Reviews, Endocrinology, The Journal of Clinical Endocrinology and Metabolism, and Molecular Endocrinology. Books include 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. Endocrine News (monthly magazine).

[Top]

Fatty Oxidation Disorders Family Support Group

Deb Lee Gould, MEd, Director
MCAD Parent and Grief Consultant
2041 Tomahawk
Okemos, MI 48864
Phone: 517–381–1940
Fax(US/Canada) 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.

[Top]

The Genetic Alliance
(formerly the Alliance of Genetic Support Groups)

4301 Connecticut Avenue, NW, Suite 404
Washington, DC 20008–2369
Phone: 202–966–5557 or 1–800–336–GENE (4363)
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 and the following specialty brochures: 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.

[Top]

The Hormone Foundation

8401 Connecticut Avenue, Suite 900
Chevy Chase, MD 20815–5817
Phone: 1–800–HORMONE
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, and a video/webcast, Recognition and Treatment of Pituitary Hormone Imbalances.

[Top]

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

Mission: To support families of children with physical growth problems and to help medical science better understand the process of growth. The Human Growth Foundation distributes funds for basic and clinical growth research.

Materials: Fourth Friday (quarterly newsletter) and Growth Series (brochures).

[Top]

Hypoglycemia Support Foundation, Inc.

3822 NW 122nd Terrace
Sunrise, FL 33323
Phone: 954–742–3098
Internet: www.hypoglycemia.org

Mission: To inform, direct, support, and encourage people with hypoglycemia.

Materials: The Blood Sugar Hotline, Hypoglycemia: Millennium Update (audiotapes), The Health Emergency Card, The Do’s and Don’ts of Hypoglycemia (book), and Seven Day Diet Menu.

[Top]

Iron Overload Diseases Association, Inc.

P.O. Box 15857
West Palm Beach, FL 33416
Phone: 561–586–8246
E-mail: iod@ironoverload.org
Internet: www.ironoverload.org

Mission: To increase public awareness of the importance of early diagnosis of iron overload, promote adequate treatment, and prevent the severe health problems and avoidable deaths that result from neglect of iron overload.

Materials: Ironic Blood: Information on Iron Overload (bimonthly newsletter), Overload: An Ironic Disease (booklet), and Iron Overload Alert (brochure).

[Top]

The Magic Foundation

6645 W. North Avenue
Oak Park, IL 60302
Phone: 708–383–0808 or 1–800–3–MAGIC3 (362–4423)
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), a newsletter for affected children, and a National Pen Pal program.

[Top]

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

Mission: To improve the health of babies by preventing birth defects, premature birth, and infant mortality through research, community services, education, and advocacy.

Materials: Brochures, posters, fact sheets, videos, nursing modules, continuing education materials, and monthly newsletter.

[Top]

National Adrenal Diseases Foundation

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) and educational materials.

[Top]

National Graves’ Disease Foundation

P.O. Box 1969
Brevard, NC 28712
Phone: 828–877–5251
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 and periodic bulletins.

[Top]

The National MPS Society

P.O. Box 736
Bangor, ME 04402
Phone: 207–947–1445
Fax: 207–990–3074
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) and informational booklets.

[Top]

National Organization for Rare Disorders

55 Kenosia Avenue, P.O. Box 1968
Danbury, CT 06813–1968
Phone: 1–800–999–6673 or 203–744–0100
Fax: 203–798–2291
TDD: 203–797–9590
Email: orphan@rarediseases.org or RN@rarediseases.org
Internet: www.rarediseases.org
Carolyn Asbury, Ph.D., Chair

Mission: A unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them; committed to the identification, treatment, and cure of rare disorders through education, advocacy, research, and service programs.

Materials: Member newsletter—Orphan Disease Update (ODU); NORD Resource Guide; Physicians Guide for Rare Disorders; booklets—free guides for physicians about several rare disorders.

[Top]

National Osteoporosis Foundation

1232 22nd Street, NW
Washington, DC 20037
Phone: 202–223–2226
Internet: www.nof.org

Mission: To prevent osteoporosis, to promote lifelong bone health, to help improve the lives of those affected by osteoporosis and related fractures, and to find a cure through programs of awareness, education and training, advocacy, and research.

Materials: Osteoporosis Report (quarterly newsletter), informational brochures, and other educational materials such as books and videos.

[Top]

National Urea Cycle Disorders Foundation

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 and quarterly newsletter.

[Top]

Organic Acidemia Association, Inc.

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).

[Top]

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

Mission: To promote research to find a cure for oxalosis, primary hyperoxaluria, and related stone diseases and improve the care and treatment of those it affects.

Materials: Patient Handbook, In Touch (newsletter), and website resources.

[Top]

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

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 and patient education brochures.

[Top]

The Pituitary Network Association

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 to the medical community, the public, and to pituitary patients and their families on early detection, symptoms, treatments, and resources available to patients with pituitary disease.

Materials: Network (quarterly newsletter), informational pamphlets, and The Pituitary Patient Resource Guide.

[Top]

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) and online patient education materials on the pituitary gland and specific disorders.

[Top]

Society for Inherited Metabolic Disorders

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 assure the availability of expertise for diagnosis and treatment of patients with inherited metabolic disorders.

Materials: Molecular Genetics & Metabolism (journal).

[Top]

United Leukodystrophy Foundation

2304 Highland Drive
Sycamore, IL 60178
Phone: 815–895–3211 or 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; and to support the identification, treatment, and cure of all leukodystrophies through programs of education, advocacy, research, and service.

Materials: Fact sheets on individual leukodystrophies and UFL News (quarterly newsletter).

[Top]

Wilson’s Disease Association International

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) and informational brochures.

[Top]

National Diabetes Information Clearinghouse (NDIC)

1 Information Way
Bethesda, MD 20892–3560
Phone: 1–800–860–8747
Fax: 703–738–4929
Email: ndic@info.niddk.nih.gov
Internet: www.diabetes.niddk.nih.gov

Mission: To increase knowledge and understanding about diabetes among patients, health care professionals, and the general public and to serve as a referral resource. NDIC is a service of the National Institute of Diabetes and Digestive and Kidney Diseases.

Materials: Educational materials are available for free or minimal cost. Literature searches are provided on a myriad of subjects related to endocrine and metabolic disorders.

[Top]


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: http://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.


NIH Publication No. 07–3567
April 2007

[Top]

  

dot

Endocrine and Metabolic Diseases Home | Endocrine and Metabolic Diseases A to Z | Statistics | Clinical Trials | Additional Resources | Order Publications | About Us |
Contact Us | NIDDK Health Information

The National Endocrine and Metabolic Diseases Information Service is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health.

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: http://endocrine.niddk.nih.gov/


Privacy | Disclaimer | Accessibility | PDF versions require the free Acrobat® Reader® software for viewing.
H H S logo - link to U. S. Department of Health and Human Services
NIH logo - link to the National Institute of Health
NIDDK logo - link to the National Institute of Diabetes and Digestive and Kidney Diseases