The foundation will be hosting an event highlighting several grant recipients plus a parent will speak on the importance of research into rare diseases both as it directly impacts care and research into other common disorders. This micro-grant program has had a direct impact by funding research where four effective rare disease therapies have been developed.
February 27, 2012
February 29th is International Rare Disease Day
A Rare Day for Rare Diseases
Local organization transforming the world of rare disease care.
As a celebration of the success of the Rare Disease Foundation’s Micro-Grant Research Program the organization will be hosting an event highlighting several grant recipients. There will be brief presentations on the results of their research including highlights on a program that when implemented will put the province at the forefront of ensuring no child with a treatable form of intellectual disability will be misdiagnosed. A parent will also be speaking on the importance of research into rare diseases, both as it directly impacts the care of a child and also how rare disease work can give new insights into common disorders.
The Rare Disease Foundation, established three years ago, is committed to growing a community that provides a new approach for rare disease research and care. Already this micro-grant program has had an impact by funding research where four effective rare disease therapies have been developed. A total of $230,000 has been distributed to date – those funds have been leveraged to bring in more than $2 million in further research dollars from other organizations. The Rare Disease Foundation’s ability to provide funds to inspired clinicians and scientists for these patient-focused projects has directly impacted the care and quality of life for children affected by rare disorders.
The event will be held:
February 29, 2012, 6-8pm, Lobby, Chan Education Centre,
BC Children’s Hospital, 4500 Oak Street, Vancouver
– 30 –
For more information contact:
Roberta Pak mobile 778.985.9170