The Rare Disease Foundation supports families throughout Canada who have a child diagnosed with a rare disease..
By Vee Cooper
July 19th 2015
Chek News Victoria
The Vancouver chapter has more than 200 families on their mailing list, but for families on Vancouver Island that used to mean a trip to the mainland to join a parent support group.
But not anymore.
The Victoria Parent-2-Parent Resource Network is entering its third year.
It’s an opportunity for parents of children with rare diseases to meet, and simply talk with each other.
“Sometimes we laugh, sometimes we cry, sometimes we complain, and sometimes we’re joyful and tell each the good moments, and support each other through the bad moments,” explains Jean Denton, who’s grandson has eosinophilic esophagitis.
“I’ve learned so much just by meeting these other families in Victoria, about all the variances between all these different diseases.”
“One might think that because these diseases are all so different, what are we going to have in common? But it’s amazing how much we do have in common,” says founder Lisa Bosdet.
Lisa’s daughter was diagnosed with Mucopolysaccharidosis Type 1.
On August 9, from 11:00 until 3:00, the Victoria chapter will host their second annual Victoria Parent Network Family Picnic and BBQ.
Read more at CHEKNEWS.CA