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Diabetes Resources
Endocrine and Metabolic Diseases Organizations

The following are nonprofit service/support, education, and advocacy groups. Inquiries from the public are welcome.


American Association of Clinical Endocrinologists

1000 Riverside Avenue, Suite 205
Jacksonville, FL 32204
Phone: 904–353–7878
Internet:
www.aace.com

Christopher Seymour, M.B.A., Executive Director

Purpose: A professional medical organization of physicians with special education, training, and interest in the practice of clinical endocrinology. Provides information and education to endocrine patients so that they can have access to the best endocrine care possible. Does not include medical advice and diagnosis.

Publications: The First Messenger (bimonthly newsletter), Endocrine Practice (bimonthly professional clinical journal), Clinical Guidelines for various endocrine conditions, and a comprehensive membership directory that supplies addresses, phone numbers, specializations, clinical interests, and board certifications of members.


American Foundation of Thyroid Patients

P.O. Box 820195
Houston, TX 77282–0195
Phone: 281–496–4460 or 1–888–996–4460
Email:
thyroid@flash.net
Internet:
www.thyroidfoundation.org

Kelly Hale, President

Purpose: A national, nonprofit organization for the awareness, education, and support of thyroid patients, their family members, health care providers, and interested parties. Support/Interest groups forming around America, low-cost public thyroid disease screenings, educational information/seminars, thyroid physican referrals.

Publications: Quarterly education newsletter with latest findings in thyroid disease, self-help information.


American Society of Human Genetics

9650 Rockville Pike
Bethesda, MD 20814
Phone: 301–571–1825
Internet:
genetics.faseb.org/genetics/

Elaine Strass, Executive Director

Purpose: A professional society of physicians, researchers, genetic counselors, and others interested in human genetics. Strives to inform health professionals, legislators, health policy makers, and the general public about all aspects of human genetics.

Publications: American Journal of Human Genetics (monthly); Membership Directory (biennially); Supplement to Journal (annually); Guide to Human Genetics Training Programs in North America.


American Thyroid Association

Montefiore Medical Center
111 East 210th Street, Room 311
Bronx, NY 10467
Phone: 1–800 THYROID (849–7643)
Internet:
www.thyroid.org

Diane Miller, Administrator

Purpose: A professional organization of physicians and scientists dedicated to scientific research on the thyroid. The association refers the public to member physicians in their geographic area on request.

Publications: Newsletter (quarterly); information pamphlets.


Cushing's Support and Research Foundation, Inc.

65 East India Row, 22B
Boston, MA 02110
Phone: 617–723–3824 or 617–723–3674
Internet:
www.CSRF.net

Louise L. Pace, Founder and President

Purpose: Provides information and support for patients along with expert medical advice from physicians. Facilitates correspondence between members and maintains a referral listing of hospitals, endocrinologists, and surgeons.


Cystic Fibrosis Foundation

6931 Arlington Road
Bethesda, MD 20814
Phone: 301–951–4422 or 1–800–FIGHT–CF
Internet:
www.cff.org

Robert Beall, President

Purpose: Supports medical research, professional education, and a nationwide network of care centers to benefit patients with cystic fibrosis (CF). Supports services for young adults with CF.

Publications: Information brochures.


Endocrine Society

4350 East West Highway, Suite 500
Bethesda, MD 20814–4410
Phone: 301–941–0200
Internet:
www.endo-society.org

 

P. Michael Conn, President
Scott Hunt, Executive Director

Purpose: A professional organization of scientists, educators, clinicians, practicing M.D.'s, nurses, and students representing all basic, applied, and clinical interests in endocrinology and devoted to research, study, and clinical practice of endocrinology. Works to improve understanding of endocrinology among the general public and medical practitioners and to promote the interests of endocrinologists at the national scientific research and health policy levels of government.

Publications: Journal publications 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. They also have a publication called Endocrine News.


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

4301 Connecticut Avenue, NW., Suite 404
Washington, DC 20008–2304
Phone: 202–966–5557
Helpline: 1–800–336–GENE (4363)
Fax: 202–966–8553
Email:
info@geneticalliance.org
Internet:
www.geneticalliance.org

 

Mary E. Davidson, Executive Director

Purpose: A nonprofit organization providing information on genetic support groups and genetic services to individuals and families who have genetic disorders.

Publications: Alliance 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"; "Starting a Support Group"; monthly newsletter.


H.E.L.P., The Institute for Body Chemistry

P.O. Box 1338
Bryn Mawr, PA 19010
Phone: 610–525–1225

Edward A. Krimmel and Patricia T. Krimmel, Co-directors

Purpose: Promotes medical/scientific research concerning the relationship between food chemistry and body chemistry specifically related to hypoglycemia. Disseminates information on body chemistry.


Human Growth Foundation

7777 Leesburg Pike, Suite 202 South
Falls Church, VA 22043
Phone: 703–883–1773 or 1–800–451–6434
Internet:
www.hgfound.org

Kimberly Frye, Executive Director

Purpose: A member organization of families of children with physical growth problems and interested persons united to help medical science better understand the process of growth. Distributes funds for basic and clinical growth research.

Publications: Fourth Friday (monthly newsletter); Growth Series (brochures).


Hypoglycemia Support Foundation, Inc.

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

Roberta Ruggiero, President

Purpose: Seeks to inform, support, and encourage people with hypoglycemia about diet and hypoglycemia.

Publications: The Hypoglycemia Support Foundation Newsletter (quarterly); The Dos & Don'ts of Low Blood Sugar (book).


Iron Overload Diseases Association, Inc.

433 Westwind Drive
N. Palm Beach, FL 33408–5123
Phone: 561–840–8512
Internet:
www.ironoverload.org

Roberta Crawford, President

Purpose: Serves and counsels hemochromatosis patients and families and offers doctor referral, as well as patient advocacy with insurance, Medicare, blood banks, and the FDA; encourages research and public information; emphasizes early diagnosis and encourages research.

Publications: Ironic Blood: Information on Iron Overload (bimonthly newsletter); Overload: An Ironic Disease (booklet); Iron Overload Alert (information brochure).


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:
mandrews@magicfoundation.org
Internet:
www.magicfoundation.org

Mary Andrews, CEO, Co-Founder

Purpose: Provides 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.

Divisions: Eleven primary Divisions and Network Coordinators for additional disorders. Each division is headed by a parent whose personal child's diagnosis matches that division. These consultants offer an acutely personal focus, providing pertinent and meaningful support to the unique needs of each family within their group. Divisions include Growth Hormone Deficiency (Children and Adults), Congenital Adrenal Hyperplasia, Precocious Puberty, Russell-Silver Syndrome, Turner Syndrome, Septo Optic Dysplasia, McCune-Albright Syndrome, Panhypopituitarism, Genital and Reproductive Anomalies (Children), and other rare disorders.

Publications: Provides educational brochures covering a variety of children's growth disorders and other adult related disorders, quarterly newsletter, The MAGIC Touch, which covers all divisions for children's disorders, including medical updates, personal stories, and organization related information. Also available is The MAGIC Star, a quarterly newsletter for adults with Growth Hormone Deficiency, and a newsletter for kids, written for affected children, and a National Pen Pal program.


Metabolic Information Network

P.O. Box 670847
Dallas, TX 75367–0847
Phone: 214–696–2188 or 1–800–945–2188

Susan G. Mize, Project Director

Purpose: Provides a system for sharing reported data on inborn errors of metabolism that may be useful to professionals caring for patients, to research investigators, and to patients seeking access to treatment.

Disorders: The 10 groups of disorders in MIN's working database of inborn errors of metabolism are biotin defects, galactosemias, glycogen storage diseases, hereditary tyrosine disorders, homocystinurias, hyperphenylalaninemias, maple syrup urine diseases, mucopolysaccharidoses, organic acidurias, and urea cycle disorders.


National Adrenal Diseases Foundation

505 Northern Boulevard, Suite 200
Great Neck, NY 11021
Phone: 516–487–4992
Internet:
medhelp.org/www/nadf.htm

 

Joyce Mullen, Executive Director

Purpose: Provides a national self-help network for educational and emotional support for patients and their families.

Publications: NADF Newsletter (periodic); educational materials.


National Graves' Disease Foundation

2 Tsitsi Court
Brevard, NC 28712
Phone: 704–877–5251
Internet:
www.ngdf.org

Nancy Patterson, Ph.D., Executive Director

Purpose: Provides medical information, referral, and resource information to patients; aids in the development of support groups; provides professional education through lectures and forums; and sponsors, develops, participates in, and supports research on Graves' disease.

Publications: Newsletter (quarterly); information brochures.


National Organization for Rare Disorders

P.O. Box 8923
New Fairfield, CT 06812–8923
Phone: 203–746–6518
Internet:
www.rarediseases.org

Abbey S. Meyers, Executive Director

Purpose: Acts as a clearinghouse for information about orphan diseases and as a network for families with similar disorders; encourages and promotes increased scientific research on the cause, control, and ultimate cure of rare disorders, including inherited metabolic diseases; accumulates and disseminates information about orphan drugs and devices; and educates the general public and medical profession about the existence, diagnosis, and treatment of rare disorders.

Publications: Orphan Disease Update (quarterly newsletter)


National Osteoporosis Foundation

1150 17th Street, NW., Suite 500
Washington, DC 20036–4603
Phone: 202–223–2226
Internet:
www.nof.org

Sandra C. Raymond, Executive Director

Purpose: Increases public awareness and knowledge about osteoporosis; provides information to patients and their families; educates physicians and allied health professionals; and supports basic biomedical, epidemiological, clinical, behavioral, and social research and research training.

Publications: Osteoporosis Report (quarterly newsletter); Osteoporosis: A Woman's Guide and Boning Up on Osteoporosis: A Guide to Prevention and Treatment; information brochures and other educational materials.


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

Robert Knutzen, Chairman, CEO

Purpose: Promotes early diagnosis; encourages research and pursues the cure of diseases caused by pituitary tumors; serves patients with diseases caused by pituitary tumors; and provides a telephone network of people with pituitary tumors in all age groups.

Publications: Network (quarterly newsletter); information pamphlets; The Pituitary Patient Resource Guide for pituitary patients, their families, physicians, and all health care providers.


Society for Inherited Metabolic Disorders

Oregon Health Sciences University/L473
3181 Southwest Sam Jackson Park Road
Portland, OR 97201
Phone: 503–494–5400

Dr. David Rosenblatt, President

Purpose: A professional organization working to increase knowledge of human physiology and biochemistry by investigating epidemiology, etiology, metabolism, pathogenesis, and prevention of conditions caused by inherited metabolic disorders. Promotes research collaboration, technological advances, and public understanding by providing a forum for communication among experienced investigators, advising the public directly and through existing organizations, and promoting public funding in support of these objectives.


Thyroid Foundation of America, Inc.

Room 350, Ruth Sleeper Hall
40 Parkman Street
Boston, MA 02114–2698
Phone: 617–726–8500 or 1–800–832–8321
Email:
info@tsh.org
Internet:
www.tsh.org

Ilia Stacy, Executive Director

Purpose: Provides public education programs, patient information, and support. Refers patients to qualified endocrinologists. Please send a business sized self-addressed stamped envelope.

Publications: The Bridge (quarterly newsletter); information brochures.


Wilson's Disease Association

4 Navaho Drive
Brookfield, CT 06804
Phone: 1–800–399–0266
Internet:
www.medhelp.org/wda/wil.htm

 

H. Ascher Sellner, President

Purpose: Promotes and sponsors research concerning the cause, treatment, and cure of Wilson's and Menkes' diseases; stresses the importance of public awareness, early diagnosis, and treatment; provides financial aid and moral support to needy individuals and organizations sharing the association's goals; collects and disseminates information to members and the public concerning developments, current research, and legislation; and acts as a clearinghouse.

Publications: The Wilson's Disease Association publishes brochures on Wilson's disease. Serial publication: Wilson's Disease Association Newsletter, (quarterly)—tips for patients and reports about current research and legislation.


The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) conducts and supports research on many of the most serious diseases affecting the public health. NIDDK conducts a broad range of basic research studies that rely on the principles and tools of genetics, chemistry, biochemistry, chemical physics, pharmacology, pathology, physiology, and molecular biology. NIDDK conducts clinical research on diabetes, other metabolic diseases such as cystic fibrosis, endocrine disorders, digestive diseases, nutrition, kidney diseases, and blood disorders.

The NIDDK's three extramural research divisions—the Division of Diabetes, Endocrinology, and Metabolic Diseases; the Division of Digestive Diseases and Nutrition; and the Division of Kidney, Urologic, and Hematologic Diseases—support basic and clinical research and research training through investigator-initiated grants, program project and center grants, and career development and research training awards.

This directory was compiled by Sharon Ricks of the NIDDK Information Office.


This publication is not copyrighted. NIDDK encourages users to duplicate and distribute as many copies as needed. Printed single copies may be obtained from the Office of Health Research Reports, NIDDK, Building 31, Room 9A04, Bethesda, MD 20892.

The Endocrine and Metabolic Diseases Information Service

Endocrine and Metabolic Diseases Information Service
6 Information Way
Bethesda, MD 20892–3569
Phone: 1–888–828–0904
Fax: 1–703–738–4929
Email:
endoandmeta@info.niddk.nih.gov

The 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), one of eight health agencies of the Public Health Service, which is under 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.

This publication is not copyrighted. The clearinghouse encourages users of this fact sheet to duplicate and distribute as many copies as desired.

NIH Publication No. 03–3567
April 2003

      

 

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