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Peer 2 Peer
Resource Network Join our free online support group. Access social support & educational resources in our community forum. |
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Research
Microgrants
Activating small amounts of money and leveraging the existing system, microgrants make a difference in the rare disease space. |
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THE POWER OF MICROGRANTS
microgrants awarded
distributed to researchers
institutions funded
Please join us for a facilitated, supportive discussion about your emotional experience of having a child with a rare disease or having a rare disease yourself. The discussion will be a continuation of a previous meeting led by Alana Newton. Alana is a registered clinical counsellor working at BC Women’s Complex Chronic Disease Program and is on the board of directors for the Rare Disease Foundation. She and her son both have Ehlers-Danlos syndrome, a rare connective tissue disorder. She is im...See event details Please come and join us at our monthly parent meetings which will range from themed parent discussions, guest speakers and videoconferencing with guest speakers. We aim to learn from each other and to find out more about caring for our special children -let's navigate the world of rare disease together. New parents always welcome.See event details Rare Finds - Feast for the Senses - YULSee event detailsVancouver Area Parent 2 Parent Resource Network Meeting
September 18 @ 7:00 pm - 9:30 pmToronto Area Parent 2 Parent Resource Network Meeting
September 19 @ 7:00 pm - 9:00 pmRare Finds – Feast for the Senses – YUL
September 26 @ 6:30 pm - 10:30 pm
STORIES
The Rare Disease Foundation (RDF) and the Clinical Research Support unit (CRSU) have partnered to help clinical researchers across BC Children’s launch new projects aimed at translating their research into improved patient care. Starting this summer, researchers awarded funding through the RDF- and BC Children’s Hospital Foundation-sponsored Microgrant and Innovative Therapies Programs will have access…
Following a period of substantial growth, the Rare Disease Foundation (RDF) has announced that David Cox will no longer be the Executive Director of the registered charitable organization. The announcement comes as RDF builds on success with increased awareness of their Peer2Peer and research granting programs, as well as their partnership with Outrun Rare. Mr….
Do you Have a Chronic Condition/Disability or Care for Someone Who Does? The UBC Health Mentors Program is looking for Health Mentors to share their medical expertise with our healthcare students. The UBC Health Mentors Program is a 9-month volunteer program in which adult mentors and/or caregivers meet 6 times with a small team of…
Stories from RDF
Follow our blog to read about stories of resilience and hope. We publish stories from families, the researchers, and our foundation to celebrate successes, increase awareness, and provide education.
RECENTLY PUBLISHED
Creating more microgrants to increase research into under-studied diseases
Providing community support and resources for families with rare disease
Creating educational programs to increase awareness and support for rare disease
