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Organizations for Endocrine and Metabolic Diseases
Endocrine Resource Center

Adapted by Mary Shomon

Alliance of Genetic Support Groups

4301 Connecticut Avenue, NW., Suite 404
Washington, DC 20008-2304
Telephone: (202) 966-5557
Helpline: (800) 336-GENE (4363)
Fax: (202) 966-8553
E-mail: info@geneticalliance.org
Home Page: www.geneticalliance.org

Mary E. Davidson, Executive Director

Purpose: A non-profit 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.



American Association of Clinical Endocrinologists

1000 Riverside Avenue, Suite 205
Jacksonville, FL 32204
Telephone: (904) 353-7878
Home Page: 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
Telephone: (281) 496-4460 or (888) 996-4460
E-mail: thyroid@flash.net
Home Page: www.thyroidfoundation.org

Kelly Hale, President

Purpose: a national, non-profit organization for the awareness, education, and support of thyroid patients, their family members, healthcare 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/latest findings in thyroid disease, self-help information.



American Porphyria Foundation

P.O. Box 22712
Houston, TX 77227
Telephone: (713) 266-9617
Home Page: www.enterprise.net/apf

Desiree Lyon, Executive Director

Purpose: Provides financial support for researchers in porphyria; improves the diagnosis and treatment of porphyria through educational programs; serves as a network for porphyria patients. Also sponsors support groups, political action, seminars, and fund-raising projects.

Publications: General brochure; Diet and Nutrition in Porphyria; Porphyria Cutanea Tarda; (AIP) Acute Intermittent Porphyria; (EEP) Erythropoietic Protoporphyria; The Prophyrias--An Overview; Hematin; and Newsletter. These brochures are all available with membership. Bulk orders are available upon request.



American Society for Bone and Mineral Research

1200 19th Street NW., Suite 300
Washington, DC 20036
Telephone: (202) 857-1161
Fax: (202) 223-4579

Julia A. Janko, Executive Director

Purpose: A professional organization of physicians, dentists, veterinarians, and other doctors interested in research and bone and mineral diseases. Supports clinical and basic research studies and encourages and mentors young scientists in the field of bone and mineral metabolism. There is no patient referral system except to osteoporosis or Paget's disease organizations.

Publications: Journal of Bone and Mineral Research (monthly); membership roster (biennially); newsletter (quarterly).



American Society of Human Genetics

9650 Rockville Pike
Bethesda, MD 20814
Telephone: (301) 571-1825
Home Page: www.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
Telephone: (718) 882-6047
Fax: (718) 882-6085
Home Page: 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.



Association for Glycogen Storage Disease

P.O. Box 896
Durant, IA 52747
Telephone: (319) 785-6038

Hollie Swain, President

Purpose: Acts as a forum for the discussion of glycogen storage disease (GSD), its treatment, and the problems faced by parents raising children with GSD. Disseminates medical information; fosters communication between the families of GSD patients and health care professionals. Helps obtain equipment necessary for home care of GSD patients.

Disorder: GSD is a hereditary condition characterized by a lack of or deficiency in any of the enzymes used by the body to break down glycogen. Glycogen storage diseases include von Gierke's disease, Pompe's disease, McArdle's disease, Forbes' disease, and Andersen's disease.

Publications: The Ray (periodic newsletter); Parent Handbook and other brochures.



Association for Neuro-Metabolic Disorders

5223 Brookfield Lane
Sylvania, OH 43560
Telephone: (419) 885-1497

Cheryl Volk, Parent Representative

Purpose: A member organization of families with children who have metabolic disorders that affect the brain. The organization provides support through personal awareness, family understanding and participation, and professional health care intervention.

Disorder: Neuro-metabolic disorders include many different, often inherited, diseases such as maple syrup urine disease, galactosemia, and biotinidase deficiency. These diseases affect body chemistry, but the organ damaged is the brain.

Publications: Newsletter (3 times a year).



Cushing's Support and Research Foundation, Inc.

65 East India Row 22B
Boston, MA 02110
Telephone: (617) 723-3824 or (617) 723-3674
Home Page: world.std.com/~csrf/

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
Telephone: (301) 951-4422 or 1-800-FIGHT CF
Home Page: 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
Telephone: (301) 941-0200
Home Page: www.endo-society.org/index.htm

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.



Fatty Oxidation Disorders Family Support Group

Montrose Drive
Greensboro, NC 27410
Telephone: (910) 547-8682 or (910) 547-0196
Home Page: www.fodsupport.org/

Deb Lee Gould, Director

Purpose: To support families in the United States and abroad coping with rare genetic Fatty Oxidation Disorders (MCAD, LCHAD, LCAD, SCAD, GAII, CPT). Provide a biannual newsletter to families and interested professionals on practical coping information, family stories, and medical and pharmaceutical updates and resources. Facilitate network of families with a similar disorder.

Publications: FOD Communication Network--biannual newsletter for families and professionals.



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

P.O. Box 1338
Bryn Mawr, PA 19010
Telephone: (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.



Hemochromatosis Foundation, Inc.

P.O. Box 8569
Albany, NY 12208
Telephone: (518) 489-0972
Fax: (518) 489-0227
Home Page: www.hemochromatosis.org

Margaret A. Krikker, M.D., President

Purpose: Seeks to increase public and professional awareness of hereditary hemochromatosis (HH) and the hazards of supplemental iron. Encourages routine use of screening tests by physicians. Assists public, patients, families, and physicians with HH diagnosis, treatment, and genetic counseling and in forming regional support networks. Provides telephone referral service to patients requesting names of physicians and research centers concerned with HH.

Disorder: Hereditary hemochromatosis is a disorder of iron metabolism in which dietary iron absorption exceeds body needs. If not diagnosed and treated, the accumulating iron may result in one or more complications such as liver enlargement, heart irregularities and failure, diabetes and other hormonal deficiencies, and arthritis.

Publications: Hemochromatosis Awareness (quarterly newsletter); information booklets and videotapes.



Human Growth Foundation

7777 Leesburg Pike, Suite 202 South
Falls Church, VA 22043
Telephone: (703) 883-1773 or 1-800-451-6434
Home Page: 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
Telephone: (954) 742-3098
Home Page: 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
Telephone: (561) 840-8512
Home Page: www.emi.net/~iron_iod/iod97.html

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).



March of Dimes Birth Defects Foundation

1275 Mamaroneck Avenue
White Plains, NY 10605
Telephone: (914) 428-7100
Home Page: www.modimes.org

Jennifer Howe, Ph.D., President

Purpose: Promotes education and research on genetic and environmental causes of birth defects.

Publications: Information pamphlets.



Metabolic Information Network

P.O. Box 670847
Dallas, TX 75367-0847
Telephone: (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, hyperphenyl- alaninemias, maple syrup urine diseases, mucopolysaccharidoses, organic acidurias, and urea cycle disorders.



National Adrenal Diseases Foundation

505 Northern Boulevard, Suite 200
Great Neck, NY 11021
Telephone: (516) 487-4992
Home Page: 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 Center for the Study of Wilson's Disease

432 West 58th Street, Suite 614
New York, NY 10091
Telephone: (212) 523-8717

I. Herbert Scheinberg, M.D., President

Purpose: Encourages and supports research concerning hereditary diseases of copper metabolism (Wilson's disease and Menkes' disease). Seeks to increase doctors' awareness of these diseases; and sponsors a diagnostic and treatment center for Wilson's disease.

Disorder: Wilson's disease is a genetic disorder in which excessive amounts of copper collect in the liver, brain, and kidneys. Menkes' disease is the reverse of Wilson's disease and is characterized by a defect in intestinal absorption of copper that leads to copper deficiency.

Publications: Information brochures. (See also Wilson's Disease Association).



The National MPS Society

102 Aspen Drive
Downingtown, PA 19335
Telephone: (610) 942-0100
Fax: (610) 942-7188
Home Page: www.mpssociety.org/

Linda K. Shine, President

Purpose: Acts as a support group for families of children with MPS (mucopolysaccharidoses) and ML (mucolipidoses); increases professional and public awareness; facilitates diagnosis and treatment through referrals to doctors and hospitals; and raises funds to further research on MPS and ML.

Disorders: MPS and ML are rare hereditary disorders caused by the body's inability to produce certain enzymes, resulting in an abnormal deposit of complex sugars in tissues and cells. This causes progressive damage that can range in severity from bone and joint involvement to massive complications in all organ systems.

Publications: Courage (quarterly newsletter); information booklets.



National Organization for Rare Disorders

P.O. Box 8923
New Fairfield, CT 06812-8923
Telephone: (203) 746-6518
Home Page: www.pcnet.com./~orphan/

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
Telephone: (202) 223-2226
Home Page: 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.



Organic Acidemia Association, Inc.

14600 41st Avenue North
Plymouth, MN 55446
Telephone: (612) 559-1797
Fax: (612) 694-0017
E-mail: OAANews@aol.com
Home Page: www.oaanews.org

Kathy Stagni, Executive Director

Purpose: Fosters communication among parents and professionals; acts as a support group. Members include dietitians, researchers, and geneticists; clinics; parents and relatives of children with organic acidemia disorders.

Disorder: Organic acidemia is the collective name for a class of genetic metabolic disorders that lead to enzyme deficiencies and require protein-restricted diets. Organic acidemia disorders include propionic acidemia, arginino succinic aciduria, isovaleric acidemia, and methylmalonic aciduria.

Publications: Organic Acidemia Association Newsletter (quarterly).



Oxalosis and Hyperoxaluria Foundation (OHF)

12 Pleasant Street
Maynard, MA 01754
Telephone: (888) 712-2432 PIN# 5392
Fax: (508) 461-0614
E-mail: exec-dir@ohf.org
Home Page: www.ohf.org

Tammy Murphy, Executive Director

Mission: To inform the public, especially patients, parents, families, physicians, and medical professionals about hyperoxaluria and the related conditions, i.e., oxalosis and calcium-oxalate kidney stones; to provide a support network for those affected by hyperoxaluria; and to support and encourage research to find a cure for hyperoxaluria.

Materials: Patient Handbook (Re: Hyperoxaluria); In Touch (newsletter); website resources.



The Paget Foundation for Paget's Disease of Bone and Related Disorders

120 Wall Street, Suite 1602
New York, NY 1005
Telephone: (212) 509-5335
Fax: 212-509-8492
Home Page: www.healthanswers.com/Sources/nhc/homepages/pf/pf2.html

Charlene Waldman, Executive Director

Purpose: Serves patients with Paget's disease of bone, primary hyperparathyroidism, and other related disorders; and assists the medical community that treats these patients.

Publications: Newsletter (quarterly); Primary Hyperparathyroidism (patient education brochure).



Pituitary Tumor Network Association

16350 Ventura Boulevard, Suite 231
Encino, CA 91436
Telephone: (805) 499-9973 or 1-800-642-9211
Home Page: www.pituitary.com

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
Telephone: (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
Telephone: (617) 726-8500 or 1-800-832-8321
Home Page: www.tsh.org
Email: info@tsh.org

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.



The Thyroid Society for Education and Research

7515 South Main Street, Suite 545
Houston, TX 77030
Telephone: (713) 799-9909 or 1-800-THYROID
Home Page: www.the-thyroid-society.org

Christine Jessee, Executive Director

Purpose: Pursues the prevention, treatment, and cure of thyroid disease and engages patient, physician, and community education.

Publications: Series of eight patient education brochures; quarterly newsletter, The Thyroid Connection; and patient education book, Could It Be My Thyroid? by Sheldon Rubenfeld, M.D.



United Leukodystrophy Foundation

2304 Highland Drive
Sycamore, IL 60178
Telephone: (815) 895-3211
Fax: 815-895-2433
Home Page: www.ulf.org

Paula Braazeal, President

Purpose: Acts as a support group for parents and families of patients with various forms of inherited leukodystrophy.

Disorder: The leukodystrophies are a group of genetically determined neurologic disorders in which progressive degeneration occurs, primarily affecting white matter. The leukodystrophies include Krabbe's leukodystrophy (globoid cell leukodystrophy or GLD), metachromatic leukodystrophy (MLD), adrenoleukodystrophy, Pelizaeus-Merzbacher disease, spongy degeneration of the brain, and Alexander's disease.



Wilson's Disease Association

4 Navaho Drive
Brookfield, CT 06804
Telephone: 800-399-0266
Home Page: 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.


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