Researchers funded by Rare Disease Foundation Micorogrants will present the results of their studies February 29, 2012, 6:00-8:30pm
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BC Women’s and Children’s Hospital
Lobby of the Chan Education Centre at the Child and Family Research Institute
February 29, 2012, 6:00-8:30pm
The Rare Disease Foundation believes in the power of a small amount of money carefully spent to make a big difference in the lives of individuals and families with rare diseases.
Dr. Jacob Rozmus: « How Genetic Technologies can help us diagnose rare diseases »
A Rare Disease Foundation microgrant helped to make the correct diagnosis in a girl with a rare immune deficiency disease which made a big difference in her treatment
Emily Morris: « Medical Geneticists’ discussion of psychiatric risks during diagnosis of 22q deletion syndrome »
A Rare Disease Foundation microgrant helped to assess how psychiatric disease is discussed among the many other medical concerns in a specific medical condition.
Dr. Hal Siden: « A standardized approach to idiopathic pain/irritability in Children with Rare Neurological Conditions. »
The medical director of Canuck Place, the children’s hospice, discusses how pain can be managed in children with rare conditions.
Dr. Clara van Karnebeek: « On a mission to improve health outcomes of rare disease patients suffering intellectual disability »
A Rare Disease Foundation microgrant funded a pilot project on identifying metabolic diseases which can be treated. The preliminary data was used to obtain a much larger grant to continue this work. An ongoing clinic where multiple specialists assess patients who have a potentially treatable condition has also been established.