Islets of Hope for persons with diabetes
American Association of Clinical Endocrinologists
1000 Riverside Avenue, Suite 205
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
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
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
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
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
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.
P. Michael Conn, President
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)
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
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
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
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
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
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 670847Susan 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
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
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
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
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
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
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
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
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
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
Page Updated 03/03/2006