Today is the launch of the Be Fair 2 Rare campaign. The campaign is intended to increase awareness of rare diseases, which affect a large number of Canadians. You can pick up a scarf to support the cause right here. Started by Simon Ibell and his iBellieve Foundation, Be Fair 2 Rare seeks awareness, funds and advocacy for the rare disease community in Canada.
And that community is huge: according to iBellieve, 1 in 12 Canadians suffer from one of approximately 7,000 rare diseases. That's more people than suffer from HIV/AIDS, heart disease, and cancer combined. Many rare diseases are debilitating or life-threatening, and according to the European Society of Paediatric Oncology, 30% of children who are born with a rare disease die before the age of five.
Canada is presently the only country in the developed world without a federal healthcare policy for the rare disease community. Be Fair 2 Rare seeks a National Plan, which would include a rare disease definition being written into Canadian healthcare policy, a national commitment to fund current rare disease therapies and treatments, a new process for the approval of these therapies, and support for research into other individual rare disease therapies and treatments. Check out the Be Fair 2 Rare website for all the details.