Did you know that 1 in 10 people in the USA are living with a rare disease? To put it in perspective, that’s approximately the same as the number of people who are left-handed!
Rare diseases don’t discriminate – they affect all races and religions, rich and poor, young and old. They are often chronic and life-threatening, 80% are genetic and about 50% affect children. A third of children who have a rare disease will not live to celebrate their fifth birthday. Of the 7000 known rare diseases, fewer than 400 have FDA-approved treatments and most patients face the same additional challenges: lack of information, limited access to specialist care and social isolation.
Rare Disease Day® takes place annually on 28 February, or on 29 February in a leap year (the rarest date on the calendar). It was established in Europe in 2008 by EURORDIS, the organization representing patients with rare diseases in Europe, and is now observed in more than 80 countries. As the official US sponsor of Rare Disease Day, the National Organization for Rare Disorders (NORD) has recently adopted a new social media campaign – #1in10 – to raise awareness that 1 in 10 Americans are living with a rare disease. “We are launching this campaign for everyone who has a rare disease, their families, caregivers, nurses and doctors to help raise important awareness for this major public health issue and the need for safe, new treatments,” comments Lisa Phelps, Director of Marketing and Community Relations at NORD.
NORD has created the Instagram account @rarediseasedayUS in addition to the official Rare Disease Day hashtags #RDD2015 and #RareDiseaseDay, which Instagrammers are encouraged to include in their photo posts to share how they are celebrating Rare Disease Day.
The theme for this year’s Rare Disease Day is ‘Living with a rare disease: day-by-day, hand-in-hand’ and Rare Disease Day organizers are asking people to raise their hands for rare diseases. To show solidarity for the 1 in 10 people in the USA and 1 in 17 people in the UK living with a rare disease, we have raised our hands.
