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Rare Finds 2013!
It really was A Feast for the Senses on a grand night at the beautiful VanDusen Botanical Garden! Our fantastic BC chefs went above and beyond the call in presenting their culinary delights. Congratulations to Chefs Eleanor and Slavita from Cadeaux Bakery for their big win; Chef Justine from Hawksworth was a very close second; Chef Dana from Fairmont Waterfront and Chef Darren from ORU were not far behind and everyone made a great showing. Rare Finds touched our hearts and raised over $110,000, which will be put to work finding solutions for children with rare conditions by June 15, 2013.
To view or download more photos, please visit Amanda Calliou Photography.
Facing Fabry Together is an educational film that captures the stories of four families from around the world that are living with Fabry disease.
Through powerful patient, family, and physician testimonials, this film seeks to highlight the common experiences shared by those with Fabry disease and to raise awareness for the disease.
Plagued by a burning pain in his hands and feet since childhood, a German artist's kidneys mysteriously begin to fail. He needed a kidney transplant to save his life. A Brazilian wife's marriage is tested after her husband develops a mysterious illness - straining their relationship and making it impossible to plan for the future. These are just a few of the intimate stories explored in a new film, Facing Fabry Together. The film was sponsored by Genzyme and is the first effort to understand…
April 13th is a day to bring awareness to the situations families face when their children have a condition that remains undiagnosed.
Many people living in the rare disease community continue to wait for the day that we can find a name for our children's disorder. Why is this so important? With a name, with a diagnosis would hopefully come a prognosis, a disease characterization, and maybe even, if we dare to dream, eventual treatment. But for now, let's keep the dreams small and think of the more immediate things that a diagnosis can bring - access to programs, services, clinics and improved care.
In recognition of the…
International Rare Disease Day 2013
What a wonderful second annual Rare Disease Day Celebration on Feb. 28! We had interesting, inspiring and touching talks on how our Microgrant program (a joint program with the BC Children's Hospital Foundation and the Child and Family Research Institute) is making a difference for rare disease patients. Chad from our Parent 2 Parent Resource Network really rocked the house with his humour, depth of understanding of what makes a parent's journey so hard and love of his son. The evening was well attended and the yummy hors d'oeuvres afterward added to a meaningful and fun time for our community to connect.
Lace Up for Kids!
For a 3rd Year UBC REC partnered with Rare Disase Foundation and BC Children's Hospital Foundation to Lace Up for Kids and raise money for rare disease research through our joint microgrant program. Over $34,000 was raised on Nov. 22 and more importantly we had a ton of fun!
