Rare Disorders, Health and Medical Directory, Health Information, Medical Resource

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You are here: Home : Conditions and Diseases : Rare Disorders

Rare Disorders

American Autoimmune Related Diseases Association
AARDA is the only nationa lorganization dedicated to addressing the problem of autoimmunity, the major cause of chronic illness. AARDA provides patient information and referrals.

Cherubs
A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.

Contact a Family
Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.

Cystinosis Foundation
Includes brochures, FAQs, medical exchange, research, and a message forum as well as details about the organization and its events, conferences and fund raising.

Facts About Diabetes Insipidus
Brief informational brochure regarding diabetes insipidus in patients with Langerhans cell histiocytosis.

Information Centre for Rare Diseases and Orphan Drugs
Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms.

International Rare Disease Support Network
A community providing more than a 1000 different links to support groups for the people of all nations.

Lymphangiomatosis and Gorham's Vanishing Bone Disease
Provides general information and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group.

Pemphigus
Background information, traditional treatments and natural medicine, plus the author's personal account.

Syncope Trust And Reflex anoxic Seizures
An information and support group working together with individuals,families and medical professionals to offer information on syncopes and reflex anoxic seizures.

Xeroderma Pigmentosum Society
Xeroderma pigmentosum is caused by a rare genetic defect in ultraviolet radiation induced DNA repair mechanisms; characterized by severe sensitivity to all sources of UV radiation (especially sunlight). The XP Society provides support to those who suffer from this disease, promotes research, and strives to increase public awareness of this and related rare diseases.

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