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 partners 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$5000 will be 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 to complete the proposed studies 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. See here for details for allowable expenses.
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 will be emailed within 20 business days from call deadline.
Applications will be de-identified and reviewed by both 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.
For program inquiries please contact the program coordinator, Chloe Lim at: research at rarediseasefoundation.org or the Chief Scientific Officer, Dr. Shirin Kalyan at: CSO at rarediseasefoundation.org. For website submission difficulties, please contact Joeline Norgaard: joeline.norgaard at rarediseasefoundation.org