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Support Groups for Rare Diseases

Links to directories/databases of support and advocacy groups and organizations for rare diseases not listed elsewhere on this site.
  1. Blogs About Rare Diseases (5)

Why Join A Rare Disease Support Group?
Reasons why joining a rare diseases support group can be helpful.

National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (U.S.) site has a list of links to support groups and organizations. You can also search for support groups and information by disease name.

Contact a Family (CaF) Directory (U.K.)
Search the Index of Specific Conditions and Rare Disorders by disease for support groups in the U.K.

The Children's Rare Disease Network
Information and profile of The Project Charity - The Children's Rare Disease Network.

In Need Of Diagnosis (INOD)
Information about the organization In Need Of Diagnosis (INOD) including its mission, resources, and contact information.

Central Nervous System Vasculitis Foundation
The Central Nervous System Vasculitis Foundation provides information, support, financial help, and funds for research.

Chordoma Support Group
An international online support group for all those affected by chordoma to offer each other friendship, support, and information.

Chromosome Deletion Outreach
Provides a comprehensive introduction, with illustrations, to chromosome abnormalities.

The Foundation Fighting Blindness
Site offers information and support for retinal degenerative diseases such as Usher syndrome and retinitis pigmentosa. Includes audio-enabled text, chat rooms, bulletin boards, and videos.

The Genetic Alliance
Search the Member Directory by genetic condition, by organization name, or by services offered.

Genetic and Rare Conditions Site
Search alphabetically by disease for support and advocacy groups and other resources. From the University of Kansas Medical Center.

Genetic and Rare Diseases Information Center
Established by the U.S. National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD), the Genetic and Rare Diseases Information Center employs experienced information specialists to answer in English or Spanish questions from the general public, including patients and their families, health care professionals and biomedical researchers.

H.E.A.R.D.
Support group for Hemagioendothelioma, Epithelioid Hemangioendothelioma And Related Disorders.

Madisons Foundation
Madisons Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication amongst parents, physicians and medical experts.

National Information and Advice Centre for Metabolic Disease (Climb)
Climb is committed to fighting metabolic diseases through research, awareness and support. We are the UK's only dedicated organisation to provide advice, information and support on all metabolic diseases to children, young adults, families, carers and professionals.

Pickaderms
An online support group for skin picking (psychogenic excoriation).

Rare Bleeding Disorders Database
This international coalition collects data on rare bleeding disorders from various clinicians and researchers engaged in this field worldwide. The RBDD site also provides news and links to the European agencies involved in the project.

Rare Cancer Alliance
Information and support groups for many types of rare adult and childhood cancers.

Not Your Typical Summer Camps for Kids
Feature article looks at The Hole in The Wall Gang Camps for children with life-threatening disorders. From the About.com Guide to Rare/Orphan Diseases.

This Child's World
Personal site offers support for families affected by septo optic dysplasia, sensory integration dysfunction, and hypopituitarism.

Unique - Rare Chromosome Disorder Support Group
Based in the UK, this nonprofit organization offers information about chromosomal disorders and a registry.

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