Rare Disease Foundation parent group share paddle with families
There is a special group of parents in Victoria that meet once a month, supported by the Rare Disease Foundation based in Vancouver. With branches across Canada, the Parent 2 Parent Resource Network was developed for parents that have kids with rare diseases. It was 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.
The rare world can be an isolating place so these connections are vital to help parents to not feel so alone in their journey, share resources, and learn from guest speakers.
Power To Be was invited to come and speak to our group about what they do for our community which is very applicable to our families. The parents loved what they heard and we decided right then and there that we would organize a canoe program with Power To Be for our rare disease families.