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 28, 2019 – Members of Parliament from four political parties joined the Rare Disease Foundation for a flag-raising ceremony on Parliament Hill today to mark International Rare Disease Day, an occasion to draw attention to the needs of the nearly 3
million Canadians who are affected by one or more of the 7,000 diagnosed rare diseases. Children are disproportionally affected and 25% of those affected won’t live to celebrate their 5th birthday. “I am very pleased to be joined by my colleagues from different parties to support Canadians who face the challenges of rare diseases every day of the year by drawing attention to their needs on International Rare Disease Day,” said Tom Kmiec, Conservative MP for Calgary Shepard and a co-host of the event. “We can and should do more to ensure there are better diagnostic services and greater access to treatments in every jurisdiction across Canada.”He was joined at the flag-raising ceremony at the Centennial Flame on Parliament Hill and a reception by fellow-MPs Francesco Sorbara, Liberal MP for Vaughan-Woodbridge, Jenny Kwan, NDP MP for Vancouver East, and Elizabeth May, Green Party Leader and MP for Saanich-Gulf Islands. “This day is an important occasion to urge the federal government to do its part to help Canadians with rare diseases by implementing Canada’s Rare Disease Strategy, including adopting a federal Orphan Drug Regulatory Framework to encourage the development and timely approval of orphan drugs in Canada,” said David Cox, Executive Director of the Rare Disease Foundation. “We also want the federal government to work with the provinces and territories to address gaps in patient access to rare disease treatments and to ensure this is part of any national pharmacare initiative that is undertaken.”The reception was also addressed by Chris Gilmor, a board member of the Rare Disease Foundation and parent of a child with a rare disease. “I strongly believe in raising our collective voice so that rare diseases get the attention they need and parents and other caregivers get the support they require,” he said. “This includes having faster and better access to different diagnostic services as well as access to treatments that can make a profound difference to patients and their loved ones.”
About rare diseases
A rare disease is defined as a condition affecting fewer than one in 2,000 people. There are more than 7,000 diagnosed rare diseases and many more undiagnosed diseases. About one in 12 people (nearly 3 million Canadians) have a rare disease. Most known rare disorders are
severe and chronic, with many being degenerative and life threatening. Rare diseases are poorly characterized, so many conditions remain unnamed. People who do not have a specific diagnosis can be denied access to necessary medical support services.
About International Rare Disease Day
International Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases. This year’s is the 12th such day, coordinated by EURORDIS, the European Organisation for Rare Diseases. On and around this day, hundreds of patient organizations all over the world hold awareness-raising activities. www.rarediseaseday.org