List of rare diseases and disorders

Support for Patients and FamiliesExplore this section for support and advocacy organizations that can help you share your story, connect with others, find knowledgeable healthcare professionals, locate financial assistance, or get involved in research and awareness activities.

Patient Advocacy Groups in the United States

List of Advocacy Organizations for Rare Diseases (PDF)

The Genetic and Rare Diseases (GARD) Information Center has compiled a list of advocacy organizations that support rare diseases.

Contact Information for Rare Disease Advocacy Organizations (Excel)

The Genetic and Rare Diseases (GARD) Information Center has collected contact information for many advocacy organizations that support rare diseases.

National Organization for Rare Disorders (NORD)

A federation of voluntary health organizations helping people with rare diseases; includes a database of patient support and health-related organizations.

Genetic Alliance

Provides information and assistance to increase the capacity of genetic advocacy organizations through networking and education and assists individuals with genetic conditions.

Global Genes Project

The Global Genes Project mission is centered on increasing rare disease awareness, public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare and genetic diseases.

Contact a Family

Rare disorder team brings together groups, families, and individuals of all ages who are affected by rare disorders, including those with late-onset conditions; Directory of Specific Conditions and Rare Disorders provides descriptions of hundreds of diseases and information on inheritance patterns, prenatal diagnosis, and related organizations; supports an international Web-based confidential linking service for individuals and families with rare disorders.

DIRLINE

DIRLINE (Directory of Information Resources Online) is the National Library of Medicine's online database containing more than 8, 000 records, including location and descriptive information about a wide variety of information resources including organizations, research resources, projects, and databases concerned with health and biomedicine.

Health Hotlines

A database of toll-free numbers from the National Library of Medicine (NLM) with descriptions of more than 14, 000 biomedical information resources, including organizations, databases, research resources, etc.

In Need of Diagnosis, Inc. (INoD)

Provides help and support to individuals with undiagnosed conditions.

Madisons Foundation

Provides information about rare diseases and connects parents whose children have the same rare disease.

March of Dimes

March of Dimes tiene como misión el mejorar la salud de los bebés al prevenir los defectos de nacimiento, el nacimiento prematuro y la mortalidad infantil. March of Dimes lleva a cabo su misión a través de programas de investigación, servicios comunitarios, educación y apoyo para la salud de los bebés.

Parent Technical Assistance Center Network

A list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26.

RareShare

An online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Syndromes Without A Name- USA (SWAN-USA)

Offers support, information, and advice to families of children living with a undiagnosed syndrome.

Patient Advocacy Groups Outside the United States

Association of Genetic Support of Australasia (AGSA) Inc.

Provides support and information for individuals and families affected by a genetic condition in Australia and other countries in the vicinity.

Australasian Genetic Alliance
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