The Rare Disease Foundation is growing and developing a community which provides a new approach to rare disease research and care. Rare diseases have a more patient-focussed research base, because in many instances, the disease itself has little or no relevant data and facts to help find treatments and cures. Some of these diseases are actually unique, and require highly particular forms of research and treatment. The patients are almost always young children, and the fact of the matter is that one-third of children diagnosed with a rare disease do not make it to age ten.
Each year, a fundraising event, called Rare Finds, takes place in Vancouver. “Our goal is to bring hope and help to the one in 12 Canadians (nearly three million) who are affected by a rare condition,” says Dr. Millan Patel, research director and co-founder of Rare Disease Foundation and event co-chair of Rare Finds 2015. Our programs are incredibly efficient, with major therapies developed for eight different diseases in the past five years, at a cost of $3,500 each.” This year’s event, featuring a dozen of Vancouver’s talented chefs, will take place April 25, at Villa Amato. Located in Olympic Village, with beautiful views of the North Shore, Villa Amato hosts the sixth annual gala event.
Coleen Christie of CTV will be back to emcee this year. Says Ms. Christie, “I became involved with the Rare Disease Foundation a number of years ago and spent some time as a board member. We’re trying to help children and families who often feel alone in the wilderness. Their diseases aren’t understood nor supported with massive fundraising campaigns. And while their disease may be rare, the number of patients who suffer from under-funded, under-researched illnesses is not. I have a friend who suffers unimaginably from a genetic disease no one has ever heard of. These people need a champion and the Rare Disease Foundation is just that. “