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 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 families, 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 and winding road.
We're a top 10 finalist in Phillips Brewing and Malting Company Benefits Brew contest and we need our community to click us to the top!
Some wonderful people nominated us for the Phillips Brewing Benefit Brew competition and we made the final 10! That means it's time to vote. The winning charity gets a beer named after them and even better, proceeds from sales get donated back to Rare Disease Foundation. How amazing is that? But we need your help. We need you to get online and vote every day, from every device, from today until December 4th. Let's get the Rare Disease Foundation to the top of the list.
Inaugural Rare Finds YEG (Edmonton) an incredible success!
Congratulations to Stephanie Patel and her amazing team for delivering an incredible inaugural Rare Finds gala, A Feast for the Senses, in Edmonton last Saturday night! It was a night of glitz and gourmet with touching stories from ultramarathoner Dave Proctor and mom of a superhero, Cristina Fehr. Tyler Dianocky did an amazing live painting during the event and the silent auction was abuzz the whole night. Key volunteers Louise and Paul Berezowsky and Jane Shenkarek did a superb job with…
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