At Defeat Duchenne Canada, we value collaboration.
We encourage you to check out resources provided on a local, national and global scale to ensure you’re equipped with what you need in your journey with Duchenne.
Family Resource from our Founder
A diagnosis of Duchenne muscular dystrophy is hard to hear. Harder to understand. Harder yet to share with family and friends. Our Founder, John Davidson, has created a video resource for Canadian families. Through sharing his story, we hope you find the strength to open up about your journey with the people you love and inspiration to join our fight to end Duchenne.
Organizations in Canada
The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with a neuromuscular disease, like Duchenne. 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, like Duchenne. 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 professionals to promote research, diagnosis, treatment and services for all rare disorders in Canada.
La Force DMD is a Canadian non-profit organization based in Quebec. La Force unites the DMD community to raise awareness around a common objective: providing access to new treatments as fast as possible and participating in the funding of promising research projects.
Muscular Dystrophy Canada is a national registered charity working to enhance the lives of those impacted with neuromuscular disorders, like Duchenne, by working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research.
Next to finding a cure, the highest priority for individuals living with neuromuscular disorders is the need for essential equipment. Families living with Duchenne are encouraged to connect with Muscular Dystrophy Canada’s equipment program to assist in obtaining the equipment needed to enhance your quality of life.
The Neuromuscular Disease Network for Canada (NMD4C) is a pan-Canadian network that brings together the country’s leading clinical, scientific, technical, and patient expertise to improve care, research and collaboration in neuromuscular disease (NMD).
Organizations outside of Canada
Defeat Duchenne Canada is a proud member of the World Duchenne Organization.
The World Duchenne Organization is dedicated to finding a cure and viable treatments for DMD, to promoting good standards of care and to informing parents around the globe about relevant issues that serve the best interests of their children and families.
‘There is a compelling need to ensure that wherever they are in the world, everyone diagnosed with Duchenne (and Becker) muscular dystrophy can benefit from a standard of care that is informed by the best practices of the best clinicians from all over the world.’
It is equally important that the information available to parents is contemporary, truthful and based upon the latest research.
The DMD Data Foundation based in the Netherlands focussed on data, connection, education and access. The Foundation aims to provide: a unified environment for patient data from various sources across the world, adopting all necessary security and legal standards as well as the data principles to make data FAIR. The Foundation also creates and disseminates tools for better use of new and existing data to support the effective, affordable and safe treatment of individuals with DMD and BMD; a unified global strategy and to provide systematic and structured training to all healthcare stakeholders; and technologies that enable patients to have full control over their care data and individual clinical trial data.
The Duchenne CAB (Community Advisory Board) is an independent, autonomous and international board of trained patient representatives (parents) from 12 different countries, currently: US, Canada, UK, Netherlands, Belgium, Germany, France, Spain, Italy, Romania, Turkey and Israel. The goal of the Duchenne CAB is to provide its collective knowledge and expertise in a common endeavor to accelerate research, development, clinical trials and access to effective treatments for DMD worldwide.
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 910 rare disease patient organisations in 72 countries. Together they are the voice of 30 million people affected by rare diseases throughout Europe.
EURORDIS’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level. They do so by uniting, expanding and reinforcing the rare disease movement of patient organizations and patient advocates around the world.
Parent Project Muscular Dystrophy (PPMD) is a US non-profit organization leading the fight to end Duchenne. They demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments and a community of support. They invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations.
Defeat Duchenne Canada has recently co-funded a two-year Clinical Fellowship in Duchenne endocrinology and bone fragility with PPMD.
Duchenne UK is the leading Duchenne charity in the UK. Their mission is to connect the best researchers with industry, their national health system and families to advance and accelerate every state of drug development.
Defeat Duchenne Canada (formally Jesse’s Journey) sits on the Project Hercules Steering Group. Project HERCULES (Health Research Collaboration United in Leading Evidence Synthesis) is a ground-breaking multinational collaboration set up by Duchenne UK to develop tools and evidence to support Health Technology Assessments and reimbursement decisions for new treatments for Duchenne muscular dystrophy (DMD). It brings together patient organisations, clinicians, academics, leading pharmaceutical companies, Health Technology Assessment agencies and other advisers to build a better evidence base for DMD.
Rare Diseases International (RDI) brings together national and regional rare disease patient alliances from around the world as well as international disease-specific federations to create the global alliance of rare disease patients and families. RDI is a network of over 70 member organisations representing rare disease patient groups in over 100 countries worldwide.
TREAT-NMD was initially established as an 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 practices today.
Blogs, Newsletters, and Events
September is Duchenne Awareness Month in Canada. Recognized by the Federal Government and Health Canada, Defeat Duchenne Canada hosts an annual challenge to raise as much awareness as possible from coast to coast, including shining a special light on World Duchenne Awareness Day on September 7.
Check out our Events Calendar to see more!
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases, Duchenne and Becker muscular dystrophy and their impact on patients’ lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
September 7 (the 7th day of the 9th month, representative of the 79 exons in the dystrophin protein) is World Duchenne Awareness Day, a global initiative to raise awareness for Duchenne and Becker muscular dystrophy (DMD/BMD). Every year, the World Duchenne Organization decides upon a special theme that deserves more attention and patient organizations, like Defeat Duchenne Canada, create a ripple of awareness in their own country.
Defeat Duchenne Canada has been a proud supporter of World Duchenne Day since the beginning. Check out our Events Calendar to see more!
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