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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
This Month's Topic: Getting Support for your Child and Family in your CommunitySee event details The inaugural Outrun Backyard Ultra will take place on June 21, 2019 the longest day of the year with Honorary Race Director, Laz Lake, creator of the Barkley Marathons & notably the most famous race director of all time. It’s the great equalizer, speed doesn’t matter maybe even a negative, what matters is grit, the...See event detailsVancouver Area Parent 2 Parent Resource Network Meeting
June 19 @ 7:00 pm - 9:30 pmBack Yard Ultra
June 21
STORIES
When hosting their monthly meetings, the Alberta Parent 2 Parent Resource Network #AlbertaRAREFamilies continues to keep its members engaged. Recently, over twenty brave campers headed out to Ol’ Macdonald Resort to enjoy campfires, s’ mores, and train rides! It was a wonderful opportunity to meet new families, to rejuvenate, breath deep and connect. Although Mother Nature did not offer…
by Alyson Doughty I recently attended #RareDialogue2019! A huge #RareDisease conference in Toronto, hosted by the Canadian Organization for Rare Disease (CORD) & Rare Disease International (RDI). It was the largest and most significant gathering of rare disease advocates – from patients to policymakers, from gene manipulators to AI gurus, from local support groups…
It is official – Dave Proctor and Outrun Rare are now part of the Rare Disease Foundation (RDF) family. The paperwork has been signed and the merger is official! Outrun Rare will become an integral part of the RDF’s brand, advocacy and fundraising efforts. RDF is thrilled to announce this partnership, and everyone involved sees…
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
