The Rare Disease Foundation
In partnership with its Resource Network volunteers, a variety of community partners and through the sponsorship of Shire Canada, the Rare Disease Foundation is excited to announce seven separate Rare Disease Day celebrations across Canada. Each event is an expression of a local rare disease community and reflects the connections between patients, families, researchers and health care providers – relationships that are key in improving care for the rare disease community.
While the details of each celebration are unique to each community may be unique, many feature a civic proclamation of Rare Disease Day, some feature speakers from the research and patient community and all feature advocacy for the patient voice in the narrative to improve care.
We are proud of all that our community can accomplish as we come together to make sure that the patient and family voice is heard in partnership with health care providers and researchers in improving rare disease care.