Idic15 Canada is please to partner with the Rare Disease Foundation in order to make the Parent to Parent Resource meetings available in your area. The parent groups initially started back in 2008, found that when a group of parents sat around the same table, a similar diagnosis was not the binding factor but rather the shared experiences. This initial parent group has now become a Parent Resource Network.
Why start a local parent group with other members of the rare disease community?
Health care and social support services are designed for patients with common diseases
Lack of a familiar diagnosis can result in patients and families being denied necessary services in hospitals, schools and the community
Patients with rare disorders like Idic15 require coordination of multiple specialists
Idic15 Canada as a supportive organization exists to help you in any way we can, but because our community has such geographically widespread membership it can be difficult to provide advice on local issues.
Sharing your experiences with your local rare disease family can help reduce isolation, provide local information and resources and be a great place to find a community sharing similar experiences