Fabry sufferers, others with rare conditions mark international Rare Disease Day today
Feb. 29 is a rare day on the calendar — a fitting choice for the first international Rare Disease Day.
Members of the Fabry Disease Society of Nova Scotia are pleased the province has proclaimed the awareness day.
Only about 250 Canadians have the rare genetic disorder. Most of them live in Nova Scotia, which has the highest rate of the disease in the world.
People with Fabry and other rare diseases plan to lobby members of Parliament today to create a "Chance for Life Fund," equivalent to two per cent of the total annual public drug expenditure to support therapies for rare disorders.
The only known therapies for Fabry are the most expensive drug on the market, at $250,000 to $300,000 per patient per year. The scarcity of people with the disease makes it difficult to build the evidence regulators require to approve public funding for such treatments.
More information is available at http://www.raredisorders.ca/index.php/site
