TREAT-NMD is a network for the neuromuscular field that provides an infrastructure to ensure that the most promising new therapies reach patients as quickly as possible. Since its launch in January 2007 the network’s focus has been on the development of tools that industry, clinicians and scientists need to bring novel therapeutic approaches through preclinical development and into the clinic, and on establishing best-practice care for neuromuscular patients worldwide.
Cure SMA Canada was initiated under the name “Families of SMA Canada” in August 2000 by a small group of caring Canadian parents who were driven to fund Canadian SMA research. In 2011, the organization evolved, became incorporated and grew. Its mission was restructured to include direct family support in addition to funding Canadian research projects.
Canadian Organization for Rare Disorders (CORD) provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.
Global Genes is one of the leading rare disease patient advocacy organisations in the world. Committed to eliminating the challenges of rare disease, Global Genes builds awareness, educates the global community, and provides critical connections and advocacy resources.
Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations to create the global alliance of rare disease patients and families.