Today we at Findacure are celebrating a very special day: international Rare Disease Day! This awareness day brings public attention to the 6,000-8,000 identified rare diseases and those who are affected.
Rare Disease Day has been going from strength to strength over the past seven years, since it was set up by EURORDIS and its Council of National Alliances in 2008. It has grown into a world phenomenon, with a record-breaking 84 countries participating in 2014, reaching hundreds of thousands of people through thousands of events.
Each year, the folks at EURORDIS select a special theme for the day, to draw attention to specific aspects of rare diseases. This year’s theme has been picked to be ‘Living with a Rare Disease: day-by-day, hand-in-hand’, aiming to raise awareness about the estimated 350 million patients worldwide, along with their families and caregivers. Patients can experience extreme isolation and poor health, with families struggling to get the right medical support due to a lack of medical knowledge about the condition.
To add our support, ahead of Rare Disease Day, Nick attended Rare Disease UK’s House of Commons reception to push politicians to continue to support the UK’s Strategy on Rare Diseases. Today, we are holding a scientific conference on drug repositioning for rare diseases, to engage the scientific community around the importance of treatment development for rare diseases. We will also be attending several other events around the country to further promote the cause.
So please join us in raising your hands for all “rare disease warriors” and their families worldwide!