On October 19th 2012, the Rare Disease Foundation Parent 2 Parent Resource Network was featured in a Rare Diseases Media Planet supplement to the National Post.
People gather around a large table, some greeting each other like old friends, others new to the group. When a speaker addresses the gath- ering and asks them to introduce themselves,it seems their reasons for attending are widely varied.Yes,they are all parents, but each of their chil- dren suffers from a profoundly dif- ferent medical condition. Each child faces different physical and mental challenges on a daily basis – not one story is the same.
Yet as the meeting progresses, the commonality within the group becomes obviously apparent. The challenges vary, but the life experi- ence of dealing with a rare disease diagnosis is something they all share. And together they deal with the ever- present uncertainty that rare disease brings by drawing on each other for strength, advice, resources, and even laughter.
A support network
So goes a meeting of the Rare Disease Foundation Parent 2 Parent Resource Network. Initiated four years ago in Vancouver as an experiment in peer-to-peer support, the goal was to develop a support network for those that had none. As a result,for the first time many participants could voice their fears, address their uncertain- ties,and help each other navigate the complex pathways of the medical, academic, and social systems – all in search of better solutions for their children.
With the success of the initial model, and with 1 in 12 Canadians being affected by rare disease, out- reach to new parents has continued. Today the Rare Disease Foundation supports Resource Network meet- ings in Vancouver & Ottawa, as well an online forum for all parents. New groups are currently launching in Toronto & Winnipeg as well as being planned for smaller locales. The vision is for all parents to feel they don’t have to walk these uncertain paths on their own.
For more information on existing and new Parent 2 Parent Resource Network groups contact families.org.
To see the full Media Planet supplement click here.