rare disease day

One in Ten Lives with a Rare Disease

February 28, 2013
February 28 is Rare Disease Day – a concept first initiated by the European Rare Disease Organization (EURORDIS) and now recognized around the world. Around 6,800 rare diseases have been...
Read More

Did You Know? It’s Not so Rare to Have a Rare Disease

February 29, 2012
We hear a lot about common conditions because so many people have them and in contrast relatively little about rare diseases. But how rare is rare? If you add up all the rare diseases it turns out that about 30 million Americans suffer from a rare disease. That’s nearly 10% of the population – suddenly rare is not so rare! Today is Rare Disease Day, so learn more about how you can help raise awareness.
Read More

We’ve Come A Long, Long Way Together… But We’re Not There Yet!

February 27, 2012
With our rare disease research initiatives for sarcoma and myeloproliferative neoplasms, patients from all over the world can contribute directly to research and connect with others who have their disease, all while learning more about themselves and their genetics. We’re amazed at the progress these initiatives have made, but there’s still a long way to go. With Rare Disease Day this week, we hope you’ll help us spread the word to encourage participation in our innovative research efforts for rare disease.
Read More

When Rare is Not Rare: Help Fight Rare Disease, Today and Everyday

February 28, 2011
Most people have never heard of osteochondrodysplasia, glycogen storage disease, or a thousand other conditions with names we may or may not be able to pronounce. Individually, each of these...
Read More