Many in our community live on a roller coaster as they search for a diagnosis for their child or loved one. It usually takes years and involves many visits to specialists, travel, late night web searches and talking to many, many people. At least half of our community never find a diagnosis and most eventually make peace with the search. There are few road maps for this journey so we set out to create one! This booklet is the product of literature searches, review of similar brochures by Contact a Family and others, structured interviews with 12 parents, several focus groups and many rounds of review by experts from health care and from families. We are so grateful to all who participated and generously gave of their time! We hope this booklet will be a useful guide and support for families as they walk their own unique winding road.
On May 4, 2017 the Genetic Non-Discrimination Act (GNA), formerly known as Bill S-201, was passed into law in Canada.
• GNA protects individuals from the use of genetic test results in areas outside of medical care and medical research, such as insurance and employment • GNA was created to remove barriers to the appropriate use of genetic services by the public
Rare Disease Foundation Parent 2 Parent Resource Network paddling together with Power 2 Be in Victoria!
Last weekend the Victoria P2P Network hosted an amazing event that got kids and parents out in a canoe for the first time ever! Power To Be rigged up some awesome adaptive equipment to get those with intense needs out on the water and a great time was had by all!
This beautiful book is touching sweet little hearts everywhere! Author/illustrator Deborah Katz is being incredibly generous and donating book proceeds to the Rare Disease Foundation. Get your copy now! Amazon.caAmazon.com