The Rare Disease Foundation Parent 2 Parent Resource Network is growing again as a new group will start in September on Vancouver Island to connect Victoria, BC area families living with a rare disease diagnosis.
When Alexandra and Lisa both reached out to the Rare Disease Foundation from their homes in Victoria they didn’t realize that they could have been connecting with each other locally. What they did know was that they needed allies and connections in the rare disease community. Seeing the potential for a rare disease community in the Victoria area, Isabel Jordan, Chair of the Rare Disease Foundation, saw that they could be a resource for one another and potentially, a touchstone for others. Enlisting their help, she set out to find help from a local genetic counsellor to volunteer to help start a local chapter of the Rare Disease Foundation Parent 2 Parent Resource Network.
Four short months later, the new Victoria area Rare Disease Foundation Parent 2 Parent Resource Network is ready to go. With a regular meeting time and place set for the next several months and another parent and volunteer already engaged to help, the organizers are excited to connect with their community.
Initiated five years ago in Vancouver as an experiment in peer-to-peer support, the goal for the initial meetings was to develop a support network for those that had none. For the first time, participants could voice their fears, address their uncertainties and help each other navigate the often ovewhelming medical, academic and social systems in search of better solutions for their families. With the success of the initial model in Vancouver, and with 1 in 12 Canadians being affected by rare disease, the Parent 2 Parent Resource Network has expanded from Vancouver to Squamish, Winnipeg, Ottawa, Toronto, and now Victoria.
The vision is to provide local, cross-disease peer-to-peer support where it is needed most – locally. Families can relate to one another because of the similar paths they walk and can help each other becauase of the many common resources they require.
The new Parent 2 Parent Resource Network in Victoria will give Victoria area families a place to connect, to share and to unite with a common voice for needed resources. Meetings will consist of a mix of roundtable discussions and guest speakers that are relevent to community needs.
The first meeting will kick off on Wednesday September 18th at 7pm and will continue monthly on the 3rd Wednesday of the month after that. For more information, contact firstname.lastname@example.org.