SUPPORT
OUR WORK
OUR INITIATIVES
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Peer 2 Peer
Resource Network Connect to other families with rare diseases. 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
Want create site? Find Free WordPress Themes and plugins.This Month’s Topic: What good is a diagnosis? The Rare Disease Foundation is comprised of parents, caregivers and clinicians who are united in their desire to change the world of rare disease care. We work together to see that more research goes into rare disease, and through... Want create site? Find Free WordPress Themes and plugins.Join the UBC Rec team in a fun afternoon of games and activities while watching a Varsity Women’s hockey game! Your kids will have fun with the UBC Rec Lace Up for Kids team – playing games, doing crafts, and eating pizza while you can relax and... Want create site? Find Free WordPress Themes and plugins.Our monthly meetings provide a combination of peer support, networking and opportunities to listen to a variety of guest speakers. This forum is intended to be a place of support and information for families affected by a variety of rare diseases. New parents always welcome. Did you...
Vancouver Area Parent 2 Parent Resource Network
October 17 @ 7:00 pm - 8:30 pm
Annual UBC Rec Lace Up Family Meet and Greet
October 20 @ 2:00 pm - 4:00 pmToronto Parent 2 Parent Resource Network
October 25 @ 7:00 pm - 9:00 pm
STORIES
A new study focusing on the common experience of parents of children with Rare Disease has recently been released. The authors of the study, Jennifer Baumbusch, Samara Mayer and & Isabel Sloan-Yip looked at parents experiences before diagnosis as well as during care to assess current gaps in healthcare as well as support impacting these families. “Despite the…
Regina!!! Peer 2 Peer meetups are now available in your city. Volunteer Ross McCreery is the leader for this group, with a tentative start date for the end of September 2018. Another exciting thing about this group is that this will be our first group that has a focus on adults living with rare disease….
Juan Flechas is honouring his deceased brother Cristian David by competing in the Mont Tremblant IronMan. Check out his short video here!
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
