Transforming
revolutionizing rare
disease care

Donate Now

Supporting
patients & families
affected by rare diseases

Join Community

Igniting
research
into rare & diagnosed diseases

View Funded Research Grants

Empowering
health-care providers
manage care for rare diseases

Donate

SUPPORT
OUR WORK

Learn about what we do

OUR MISSION

We create communities of patients, caregivers, health care
providers, researchers & supporters, that work together to
transform the lives of those living with rare disease.

OUR INITIATIVES

Peer 2 Peer
Resource Network

Join our free online support group. Access social support & educational resources in our community forum.

Learn more

Research

Microgrants

Activating small amounts of money and leveraging the existing system, microgrants make a difference in the rare disease space.

Learn more

THE POWER OF MICROGRANTS

482

microgrants awarded

$1.72 million

distributed to researchers

50+

institutions funded

UPCOMING EVENTS

Montreal Area Parent 2 Parent Resource Network Meeting
March 27 @ 7:00 pm - 9:00 pmOur first meeting! Come and show your support. If you are unable to attend in person please contact us by email and we will set you through our teleconferencing system. Notre première rencontre! Venez montrer votre soutien. Si vous ne pouvez pas assister en personne, veuillez nous contacter par e-mail et nous vous contacterons via notre système de téléconférence. See event details
Victoria Area Parent 2 Parent Resource Network
April 9 @ 7:00 pm - 9:00 pmWelcome to our group in Victoria B.C.! Please come and join us at our monthly parent meetings which will range from themed parent discussions, guest speakers and videoconferencing with guest speakers in Vancouver. 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
Vancouver Area Parent 2 Parent Resource Network
April 17 @ 7:00 pm - 9:30 pmThis Month's Topic for Discussion: TBA 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 our Parent to Parent Resource Networks we band together to share resources and navigate the world of rare disease care together. See event details
Montreal Area Parent 2 Parent Resource Network Meeting
April 24 @ 7:00 pm - 9:00 pmThe 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 our Parent to Parent Resource Networks we band together to share resources and navigate the world of rare disease care together. See event details

STORIES

March 20, 2019Sylvia EngNews

Rare Diseases allocated funds in the 2019 Federal Budget

This week, the Canadian Government published its budget for 2019 and for the first time, rare diseases is included in the budget. The Budget, that can be read here, will allocate over $1 billion towards rare diseases and changing the heath care system. More specifically, the government will create 3 key items: the Canada Drug…

Rare Disease Day on Parliament Hill

MPs from four parties unite for Parliament Hill flag-raising to mark International Rare Disease Day Federal government urged by the rare disease community to implement Canada’s Rare Disease Strategy by adopting a federal Orphan Drug Regulatory Framework and by working with provinces to address gaps in patient access to rare disease treatments OTTAWA – February…

Elizabeth May – A Rare Disease Leader

It is official – Member of Parliament Elizabeth May (Saanich – Gulf Islands) and leader of Canada’s Green Party is a rare disease supporter. On Wednesday January 24th in Sidney BC, May met with 7 rare disease families to listen to their concerns. This is the second time that RDF families have consulted with May…