Rare Disease Foundation (RDF) is thrilled to announce a major new milestone in their Microgrant program. The registered charity has awarded over $2 million towards 547 research grants over the past 11 years.
The grants, mostly $3500 microgrants, are designed to fund innovative programs designed to accomplish a specific research goal that directly improves the care of those affected by a rare disease.
Millan Patel, MD, RDF co-founder and interim Chief Executive Officer said, “I am so proud of the many novel research programs we have funded. The research has changed the lives of many rare disease families while also introducing a new generation of young researchers to the value they can bring to our community. Managing a rare disease is a team effort and the RDF Microgrant program is an efficient and effective way to bring that team together.”
Shirin Kalyan, PhD, Chief Scientific Officer for RDF noted, “$2 million is a great milestone but it is just the beginning. We look forward to expanding our research program and reaching more institutes throughout the world. To date, the grants have been awarded to 57 institutes across 3 continents. We look forward to growing those numbers.”
Grants have been awarded across numerous research disciplines, from biochemistry and physiology, to dietetics and economics. For example, one $3,500 microgrant was given to a dietician student who developed an App to help those with metabolic conditions monitor their diet. The App was well received by families, while also providing an opportunity for a university student to learn more about rare diseases and develop a practical tool that can be used by families and researchers to monitor dietary intakes. For another microgrant, the economics of rare diseases was the focus. Patricia Birch of the Department of Medical Genetics at the University of British Columbia showed the excessive cost that a family must endure to manage a rare disease. For example, the average cost is $44,000 a year with a majority of that cost due to lost income to care for a child. Studies like these can help educate policy makers about the real cost of rare diseases that is not being discussed by those currently developing a national healthcare program.
In the years to come RDF is looking forward the many ways their grants will help the rare disease community and engage new researchers. Among the most recent crop of grants is one study looking to develop antisense oligonucleotides to treat giant axonal neuropathy and another study exploring if a certain type of strength-training can slow progression of muscle weakness in myotonic dystrophy type 1. These two examples illustrate both the cutting-edge technology being funded by RDF as well as the value of using old standbys in innovative new ways.
To learn more about RDF’s Research Program, click here.
About Rare Disease Foundation (RDF)
The Rare Disease Foundation is a registered Canadian charitable organization, founded in 2008, by a deeply committed community of patients, their families and scientific researchers, working together hand-in-hand to transform the lives of Canadians living with rare disease. RDF provides innovative research, aimed at fast-tracking cures, and brings networks of patients and care-providers together, to share local support, expertise and resources.
For more information about RDF, please visit us at www.rarediseasefoundation.org
Rare Disease Foundation