The Alpha-1 Association is a patient-driven organization dedicated to identifying individuals affected by Alpha-1 and improving the quality of their lives through support, education, advocacy and to encourage participation in research.
Belgium Rare Diseases
RaDiOrg.be is als nationale alliantie voor zeldzame ziekten erkend door Eurordis, de Europese federatie voor zeldzame ziekten.
RaDiOrg.be heeft als opdracht:
De stem vertolken van mensen in België die getroffen worden door zeldzame ziekten
Ervoor zorgen dat die stem gehoord wordt en dat er naar geluisterd wordt door alle betrokken partijen, vooral door de politiek verantwoordelijken en beleidsmakers.
Canadian Celiac Association
The Canadian Celiac Association is the national voice for people who are adversely affected by gluten, and is dedicated to improving diagnosis and quality of life.
Celiac Support Association
Celiac Support Association pursues a mission that dedicates its efforts to helping individuals with celiac disease and gluten sensitivities through research, education and support.
Cooley's Anemia Foundation
The Cooley’s Anemia Foundation is dedicated to serving people afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley’s anemia/thalassemia major.
CORD: Canadian Organization For Rare Diseases
CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 561 rare disease patient organisations in 51 countries.
We are the voice of 30 million people affected by rare diseases throughout Europe.
Fabry Support & Information Group
The Fabry Support & Information Group provides the Fabry community and the general public with information, advocacy, education, and compassionate support to improve quality of life and the quality of care.
International MPS Network
The International MPS Network is the official body of the patient associations representing Mucopolysaccharidose diseases (MPS) and MPS Societies at a European and global level.
National Organization for Rare Disorders, Inc. (NORD)
Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
No Stomach For Cancer
No Stomach For Cancer is a non-profit who's goal is to advance awareness and education about stomach cancer, including Hereditary Diffuse Gastric Cancer (HDGC), provide a support network for affected families, and support research efforts for screening, early detection, treatment, and prevention of stomach cancer.
Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.
Rare Disease Foundation
The Rare Disease Foundation is focused on linking basic science and clinical practice to increase the efficiency of rare disease research.
Rare Disease UK
RDUK is the national alliance for people with rare diseases and all who support them. It was established by Genetic Alliance UK, the national charity of over 140 patient organizations supporting all those affected by genetic conditions, in conjunction with other key stakeholders in November 2008.
Romanian National Alliance for Rare Diseases
Alianța Națională pentru Boli Rare din România a fost înființată la inițiativa Asociației Prader Willi din România în august 2007, printr-un proiect finanțat de către CEE Trust. Pentru înființarea Alianței și-au reunit eforturile 32 de membri fondatori: organizații de boli rare și grupuri de pacienți pentru care boala este atât de rară încât nu există o asociație.