This past Wednesday, February 27, the Canadian Organization for Rare Disorders held their Rare Disease Day Awards Gala Celebration. The Canadian Association of PNH Patients is happy to report that our founder and president, Barry Katsof, was recognized as a rare hero for his contributions to the rare disease community in Canada.
February 28, 2013 is International Rare Disease Day, and Canadians with rare conditions are speaking up to bring awareness to the challenges members of this community face. In particular, patients living in New Brunswick are raising their voices, as it is one of only two provinces without a provincial catastrophic drug program.
On 21 February, the RQMO (Quebec Coalition of Orphan Diseases) Awareness Day will take place at the Quebec National Assembly as part of Rare Disease Day (February 28). The RQMO invites you to send a letter to your MNA to ask that he or she comes to meet the group. The letter can be downloaded here. Find the email address of your MNA here. If you would like to personalize your letter with a short testimonial, please feel free to do so. Other ways to raise awareness: Wear the I’M RARE badge on International Rare Disease Day Request that your doctor, hospital or convenience store display this poster Give or mail our brochure to your doctor and your other health professionals Ask your family, friends and colleagues to send the letter to their MNA