Our Story
The Rare Disease Foundation has a passion and solid track record for delivering potential cures and providing meaningful seed-funding for R&D, in addition to resources to rare disease patients and caregivers.
We differ from traditional charities that focus on common ailments by funding large-scale, multi-decade research projects with significant overhead costs that mostly support personnel and administrative salaries.
Seed Funding R&D: Small Investment, High Impact
Since 2009, we have delivered 464 microgrants and 14 potential cures by investing as little as $2.1 million in funding. Our global reach has led us to work with institutions in over 50 countries on 3 continents. The researchers of 25% of these microgrants have gone on to attain up to $8.6 million in bridge funding to expand their work which we jump-started with our microgrant investment.
The core principle of our research philosophy is to enable practitioners, patients and researchers to find practical solutions by repurposing drugs and finding cures within 12-48 months with a seed investment of as little as $5,000.
In our Translational Care Research Model, patients are participants, evolving from end-users to change catalysts and decision makers, green-lighting seed funding on microgrant research projects that promise the most immediate and practical benefits.
Need for Community
When it comes to programs, our philosophy is that no one is an island, and at no time does an individual feel more isolated and alone then when they are facing a rare disease or condition. We believe that tribal knowledge and peer-to-peer support brings connection, growth, efficiencies, and critical support to families in the rare disease space.
Most recently, when the COVID-19 pandemic struck, RDF pivoted towards meeting the most critical needs of the rare disease community across Canada through the Glowing Hearts Campaign.
Pediatric Research
This initiative aims to provide solutions for the most vulnerable population, children living with a rare disease, who were mostly overlooked during the pandemic. Three research projects, with two currently still in progress investigated different facets of the COVID-19 pandemic on children:
- This initiative aims to provide solutions for the most vulnerable population, children living with a rare disease, who were mostly overlooked during the pandemic. Three research projects, with two currently still in progress investigated different facets of the COVID-19 pandemic on children:
- “Experiences of Medical Trauma Among Parents of Children with Medical Complexity” Principal Investigator: Dr. Tammie Dewan
- “Patient-Reported Outcome Measures during COVID-19 to Promote Research and Collaboration for Children with Medical Complexity and Rare Diseases.” Principal Investigator: Dr. Nora Fayed
Emergency Groceries & Medical Supplies
This program funded over 60 families across Canada with a stipend to assist with food insecurity and need for medical supplies during the pandemic.
Mental Health & Wellness
This program addresses the mental health needs of rare disease patients (children and adults), caregivers and their families through one-on-one virtual counselling sessions with a mental health provider through our service delivery partner, REACH Trauma Response Consulting Ltd. To date, we have delivered over 200 sessions with demand increasing each month.
Our Next Chapter
Building on our Canadian success, the next phase of our growth includes a formal launch in the USA to address the need for research and support benefiting 27M Americans.Our upcoming technology launch of the Rare Finds mobile app will connect and fund projects in a more seamless and collaborative way, ensuring even more impact and return on investment.
Our Goals
- To raise $4.8M by the end of 2022
- Micro-fund 600 new research projects
- Expand our support network across the USA and Latin America