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 in the past 5 months. During a previous meeting, families requested that May work on behalf of rare disease families regarding Canada’s lack of an Orphan Drug framework. At the most recent meeting, May reassured the group that she is working on their behalf by consulting with the Federal Minister of Health and other colleagues when an opportunity presents itself.
Rare Disease Day
On February 28th, May will be in Ottawa for a flag raising ceremony hosted by RDF. Also in attendance will be MP Tom Kmiec (Conservative for Calgary- Sheperd), Francesca Sorbara (Liberal for Vaugh-Woodbridge), Jenny Kwan (NDP for Vancouver East) as well as numerous dignitaries from government, the pharmaceutical industry, RDF, CORD, and Rare Disease Review. The event will recognize February 28th as Rare Disease Day in Canada and bring awareness to Canada’s Rare Disease Strategy which proposes a five-point action plan that will address unnecessary testing, wrong diagnoses and missed opportunities to treat.
- Improving early detection and prevention,
- Providing timely, equitable and evidence-informed care,
- Enhancing community support,
- Providing sustainable access to promising therapies and
- Promoting innovative research
Share Your Story
May encourages all rare disease families to forward their stories and photographs to her office at Elizabeth.May@parl.gc.ca. With so many dignitaries in attendance on Rare Disease Day, it will be a great opportunity to show them we are more than a statistic. We are Canadians. So please take a few minutes to share your story.
Ottawa is not the only city having a special Rare Disease Day event. To find one near you, please visit RDF’s calendar at: rarediseasefoundation.org/events/
Thank you to our Victoria Resource Network Parent2Parent group for never giving up!!