PFOND HomeDeveloped by the Wasserman Laboratory at UBC, PFOND is a web-based service to promote the sharing of information about research, treatment, and resources for rare genetic disorders.
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This is a list of our published sites. We have more sites in development! Stay tuned.
While some genetic disorders are common, the great majority are extremely rare. Due to the low frequency, many families feel isolated in their struggles to provide and obtain the quality of care needed. As evident in the success of support organizations for more common disorders such as autism, huntington’s disease and cystic fibrosis, supportive interactions within a community can improve care, relieve stress and raise hope. Unfortunately for those individuals with the rarest of disorders, such online communities can be difficult to launch, harder to maintain and, oftentimes, transient.
Within the PFOND project, we envision a community of volunteers coming together to create online resources for communities struggling with rare disorders. The volunteers, usually advanced undergraduates with long-term interests in medicine or genetics, benefit from the chance to engage with a specific community for an extended period. Overtime, we hope to have a large community of volunteers and alumni who will participate in the process, improving the quality of the information and interactions.
As we launch our efforts, we recognize that the resource will be sparse. As we progress, it is our hope that the quality will become sufficient to motivate the impacted families to share their ideas, frustrations and dreams.
If you are impacted by a genetic disorder, you can look at the existing pages or let us know if your interests are not in PFOND yet. We’ll get on it as soon as we line up a volunteer.
If you are interested in volunteer work with PFOND, you can apply here.