Jesse’s Journey strives to positively contribute to all aspects of the Duchenne muscular dystrophy community. We encourage you to get in touch with any of organizations listed below to learn more about the work they are doing on a local, national, and global scale.
The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from patients across the country to improve the understanding of neuromuscular disease and accelerate the development of new therapies.
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. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.
Uniting Canadian families, researchers, and healthcare teams toward improved outcomes for neuromuscular diseases.
Stand for Duchenne Canada is a not-for-profit organization founded by a small group of individuals whose lives have been touched by Duchenne muscular dystrophy. We were born out of the need identified by founders, Nicola and Ed Worsfold, for a group dedicated to supporting families like theirs – especially at the beginning of their journey when their son was diagnosed with Duchenne.
As a national, voluntary organization, Stand for Duchenne Canada’s mission is to unite families living with Duchenne to strengthen their lives through advocacy and support.
TREAT-NMD was initially established as a EU funded ‘network of excellence’ with the remit of ‘reshaping the research environment’ in the neuromuscular field. The network has developed from its European roots to become a global organization bringing together leading specialists, patient groups and industry representatives to ensure preparedness for the trials and therapies of the future while promoting best practice today.
Parent Project Muscular Dystrophy fights to end Duchenne. We accelerate research, raise our voices to impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies.
La Force’s mission is to unite the DMD community to raise awareness around a common objective: that of providing access to new treatments as fast as possible and to participate in the funding of promising research projects.
Where access to treatments for rare diseases is concerned, it is essential that our community be strong: each member must be an active spokesperson who helps raise awareness for DMD among the general public, as well as for the challenges associated with access to treatment.
Jesse’s Journey is a member of the World Duchenne Organization