Rare or ‘orphan’ diseases include nearly 8000 disorders and affect 1 in 12. For children with rare diseases, standard medical approaches often do not meet their needs, necessitating further research. However, research precedent often does not exist for rare diseases and never exists for uncharacterized diseases. Thus, the traditional research funding paradigm, which requires precedent and evidence of prior funding in an area of expertise, is unsuitable to fund research into rare or uncharacterized diseases.
The Rare Disease Foundation has recognized this problem and identified a new model for improving care of patients with rare disorders. For patients with rare conditions, research IS care. To this end, the Rare Disease Foundation, in collaboration with our partner BC Children’s Hospital Foundation (BCCHF), provides microgrants to expedite exploration of new ideas for understanding rare diseases and improving patient care. Click here to see summaries and videos about our funded projects. Awards of up to CAD$5,000 are available, one investigator may apply for multiple awards and awards are in effect for 1 year from project start date. Please ask only for what you need as our funds are limited. Travel expenses to conferences will not be covered but technical services or salaries, reagents, etc. will be. No overhead is paid with a microgrant. Click here for details on allowable expenses.
- involve a rare disease or rare sub-type of disease (lifetime prevalence < 1 in 2000)
- directly impact patient care for one or more patients
- be scientifically valid and feasible
- have ethics approval (microgrant activation requires an ethics approval certificate, where applicable)
Applications may be submitted by anyone as long as they have a collaborator to receive funds who is associated with a Canadian institution or a Registered Institution listed here. Research proposals are about 1 page in length, must indicate how this study will improve care, include a scientific summary containing background, hypothesis, methods and brief budget justification sections, and include a lay summary addressing a non-medical, non-scientific audience. Information on the next call will be made available in May 2020. Decision letters are emailed within 20 business days from call deadline.
Applications will be de-identified and reviewed by multiple scientific and parent/patient (lay) reviewers for their impact on care, scientific validity and for their adherence to the priorities of patients and their families. Successful applicants are expected to provide a 1 paragraph lay summary describing their results upon project completion and describe how their work improved patient care. Funded projects are expected to lead to dissemination of results through publication or meeting presentation, and/or generate preliminary data for larger studies directed at improving patient care. If funding is readily available elsewhere, the rationale for requesting it from this program should be provided. We request that publications containing data supported by microgrants acknowledge the support of the Rare Disease Foundation and BC Children’s Hospital Foundation. We love to receive feedback on the longer term impact of the work we fund so please reach out and let us know if something awesome happens down the road with your project.
For inquiries regarding the program or eligibility, please contact Chloe Lim, Program Coordinator at research [at] rarediseasefoundation.org or the Chief Scientific Officer, Dr. Shirin Kalyan at CSO [at] rarediseasefoundation.org