The parent groups initially started by the Rare Disease Foundation 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 2 Parent Resource Network that has expanded from its initial beginnings in Vancouver to include Resource Networks in St. John's, Ottawa, Toronto, Calgary and Victoria.
The groups host roundtable discussions and guest speakers, many of which are webcast to the online community. The website has a library of past webcasts plus online forums and shared resources. As our online and offline community grows, locally, nationally and internationally, patients and families will develop a stronger voice as a community of rare disease advocates.