Our new fundraising partner Darelle is offering a chance to win a $500 Gift Card without purchasing anything!
Win a $500 Gift Card with darelle! @darelle is a new online marketplace created to benefit charities, businesses, and consumers. We’ve partnered with them on a fundraising initiative where they are donating $1 to the Rare Disease Foundation for every new member that joins their site, chooses us as their charity of choice and joins a Buy Request (no purchase necessary) AND they’re giving one lucky new member a $500 Gift Card as well! Click on this link and follow the three easy steps to help…
Parents don't know where to turn when faced with a diagnosis of a very rare or unique condition. If a relevant disease-based organization exists, it may be national or international in scope and other affected families may live far away. The Rare Disease Foundation can help at a local day-to-day level. Our parents have found that they have much to offer each other, regardless of diagnosis.
The statistic of 1 in 12 (or 1 in 10) people being affected with a rare disease is often quoted but its basis is rarely explained. We believe the actual chance of someone being affected with a rare disease in their lifetime (called lifetime prevalence) cannot be determined as there are not enough people trained to diagnose rare diseases and some conditions are either too severe to be compatible with life or are quite mild so are missed. There are also a large number of rare diseases waiting to be described so any estimate is likely to be an underestimate. One could even say every disease is rare because the genome, environment and lived experience of each patient form a unique constellation. With these caveats in mind, we calculate the lifetime prevalence of rare diseases at between 1 in 12 and 1 in 13 by:
3. Adding the prevalence of major birth defects and intellectual disability in the population (5%, range for this estimate is 2.3% to 6%).
Many people tell us they do not think that 1 out of every 12 people they know has a rare disease. We believe our estimate does not match common experience because a lot of children with rare diseases do not survive and because a lot of people who have rare diseases look completely normal to the outside observer. MP/2014
Vancouver Rare Finds a resounding success! Over 225 guests entered the flow, enjoying absolutely amazing food in a great space. Over $120,000 was raised and will be available for immediate funding of our May microgrant competition!