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.
DIRLINE
DIRLINE
(Directory of Information Resources Online) is the National Library of
Medicine's online database containing over 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.
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.
Patient Advocacy Groups in the United States
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.
National Center for Rare Diseases
The
Web site of the Italian Health Ministry's Program for Rare Diseases (in
Italian); also lists links to other rare diseases Web sites.
Swedish National Center for Rare Diseases
A
knowledge database about rare diseases that provides information about
rare diseases, support, and services in Swedish and, for some, in
English.
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 as well as their
application in practice, and to support all areas of education and
science in medicine.
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.
New Zealand Organisation for Rare Disorders (NZORD)
Provides New Zealand's central starting point for information about rare diseases.
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.
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.
For information contact the Korean Institute of Health.
SELF-ADVOCACY STEPS FOR PARENTS
- heidi1439
on Oct. 13, 2009 at 3:18 PM