The following provides information about national and international federations or umbrella organizations whose focus is on representing and furthering associated disease-specific patient advocacy groups with a focus on rare diseases support, diagnosis, treatment, and research.
Note: ORDR does not endorse or promote any of these organizations. When you enter the Web sites below, you will leave the ORDR Web site. Please see the site policies for more information.
Featured on the Homepage
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.
Genetic Alliance
Provides information and assistance to increase the capacity of genetic advocacy organizations through networking and education and assists individuals with genetic conditions.
Patient Advocacy Groups in the United States
Genetic Alliance
Provides information and assistance to increase the capacity of genetic advocacy organizations through networking and education and assists individuals with genetic conditions.
The Children's Rare Disease Network
The Children’s Rare Disease Network will create greater public awareness for rare disease while connecting, educating, and empowering the millions of families and caregivers affected through an online community and collaborative portal.
Patient Advocacy Groups Outside the United States
European Organization for Rare Disorders (EURORDIS)
A patient-driven alliance of patient organizations and individuals active in the field of rare diseases building a pan-European community of patient organizations and people living with rare diseases to fight against the impact of rare diseases on their lives.
Canadian Organization for Rare Disorders (CORD)
Canada’s national network for organizations representing patients with rare disorders works with governments, researchers, clinicians, and industry to promote research, diagnosis, treatment, and services for all rare disorders in Canada.
Australasian Genetic Alliance
The Australasian Genetic Alliance (AGA) is a network of peak organizations that represent genetic support groups, individuals, and families in the Australasian region who are living with a genetic condition or a genetic predisposition. For information on genetic support groups and services in your state, contact the relevant state Alliance member.
Bulgarian Association for Promotion of Education and Science (BAPES)
The Information Centre for Rare Diseases and Orphan Drugs is a project and activity of the Bulgarian Association for Promotion of Education and Science (BAPES), whose objectives are to stimulate scientific research, to stimulate the development of technologies and their application in practice, and to support all areas of education and science in medicine.
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.