MitoCanada has established many rich, diverse and beneficial relationships with national and global foundations, patient groups, academic institutions, technology innovators and industry, some of which are listed below. Collectively these relationships support the advancement of knowledge, research and care for the MitoCommunity.
Canadian Organization for Rare Disorders (CORD)
CORD is Canada’s national network for organizations representing all those with rare disorders. CORD advocates for health policy and a healthcare system that works for those with rare disorders. They work with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. 1 in 12 Canadians have a rare disorder (which affect less than 1 person out of 2000), and many others are affected or are at risk but remain undiagnosed. CORD provides information to individuals, and links to other rare disorder support groups and organizations.
International Mitochondrial Patients (IMP)
Since 2011, IMP has brought together 16 national patient organizations from around the world and facilitated international discussions about mitochondrial diseases. The national patient organizations support and advocate for patients, fund research, increase awareness and improve education in their country. By joining forces, IMP represents a large group of patients, creating a stronger voice on an international level, and is an international bridge between patients, clinicians, scientists, industry and policy makers.
The LHON (Leber’s Hereditary Optic Neuropathy (LHON) Society was established to create a home for those in the British Isles affected by and with an interest in, LHON. Our provide access to:
- Shared experiences of those living with LHON and their families
- Sources of practical and emotional support
- Up-to-date information on practical innovation and scientific progress into LHON
The Mito Foundation was founded in 2009 by Doug and Margie Lingard, their friends, and experts in the field of mitochondrial disease, after losing both their children to mito. Their goal is to be the pre-eminent source of energy, hope and support for the mito community, while seeking a cure. Through grants and
scholarships, the Mito Foundation funds essential research into the prevention, diagnosis, treatment and cures of mitochondrial disorders, and increases awareness and education about this devastating disease.
MitoAction is a non-profit organization founded in 2005 by patients, parents and Boston hospital healthcare leaders. Their mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes to children affected by mitochondrial disease. They strive to raise awareness about mitochondrial disorders internationally, highlight their relationship to other diseases, and connect the global mitochondrial disease community. MitoAction provides support through expert education events, a mobile platform for managing day-to-day life with Mito, and one-on-one support through Mito411.
Mito2i (Mitochondrial Innovation Initiative)
Mito2i brings together a network of researchers, clinicians, patients and advocates, academic institutions, NGOs and industry partners to transform the understanding of the role of mitochondria in human health and disease. Together with its partners, Mito2i aims to deliver supporting technologies, integrative platforms, and interdisciplinary knowledge that will lead to a paradigm shift in the way clinicians approach the diagnosis and treatment of disease and consider the potential role of mitochondrial dysfunction in multiple, prevalent medical conditions. Through innovation grants, they aim to advance research, innovation and treatment. They focus on training the next generation of mitochondrial research leaders and building awareness in mito health and disease research through symposiums, workshops and conferences.
Mitochondrial Care Network (MCN)
Launched in 2018, the Mitochondrial Care Network represents a group of physicians from medical centres across the US that have expertise and experience in providing coordinated, multidisciplinary care for patients with genetic mitochondrial disease. This network was created to help improve the quality of mitochondrial patient care and implement best practices and standards of care in mitochondrial medicine. They commit to determining the gaps in mitochondrial disease care and helping to improve the diagnosis, treatment and patient outcomes. This network is a collaborative effort on behalf of patient advocacy groups, the Foundation for Mitochondrial Medicine, MitoAction, the United Mitochondrial Disease Foundation as well as the mitochondrial disease clinician society.
Mitochondrial Medicine Society
The Mitochondrial Medicine Society was founded in 1998 by doctors Richard Haas and Robert Naviaux. They represent an international group of physicians, researchers and clinicians working towards advancing education, research and global collaboration in clinical mitochondrial medicine.
Rare Disease Foundation
The Rare Disease Foundation was founded in 2008 by two physicians and a group of parents to children with a rare disease who united their efforts to find clinical answers and provide concrete solutions to rare disease patients, families and caregivers. They built the foundation on the principle that it would be a catalyst for change through their microgrant research funding program and support services. They envision a society where rare disease care and treatment is accessible to all, by revolutionizing awareness, developing innovative cures through their research programs, and providing resources through community and clinical support channels.
United Mitochondrial Diseases Foundation (UMDF)
During the past 25 years, UMDF has built a network of the top clinicians, hospitals and researchers dedicated to fighting mitochondrial disease. They are driven by a nationwide community of ambassadors solely focused on supporting patients and families affected by mitochondrial disease. They are committed and energized to make a difference by funding the best science no matter where it is found in the world and providing critical programs and services to the patient families they serve. UMDF has 90 ambassadors across the United States supporting patient families. They have funded 125 research projects and helped generate $150 million in government grants.
Zamplo designs to empower people to be at the center of their own health journeys based on what is most important to them. The social enterprise empowers people with the resources, knowledge and tools they need to mobilize their own personalized health data, connect meaningfully with the wisdom of the global health community, and spend less time on health care and more time living their best possible lives. Co-founder Shaneel Pathak incorporates his own experience caring for his late wife during her journey as a cancer patient into every aspect of the business. Shaneel understands the significant challenges patients and their caregivers face during treatment and the need to have constant access to current, accurate information to support making informed decisions.