Rare Disease Day Roundup: What’s Happening in Your Neighborhood?

Dewey Marino from San Diego, California wrote to…

BioMarin Collaborates with CureDuchenne to Transfers Natural History Database and Improve Knowledge, Improve Clinical Outcomes
 CureDuchenne announced today that BioMarin Pharmaceutical Inc. has transferred its Duchenne natural history database to CureDuchenne,… Continue Reading
‘Engaging your Community for Fundraising’ Workshop By Findacure
As part of Findacure’s training series for small rare disease patient groups, our next workshop will focus on the topic of community… Continue Reading
Rare Disease Report: Making Progress in Rare Diseases
After 30 years, the Orphan Drug Act is helping small companies innovate in small patient populations. While rare diseases are, by… Continue Reading
Medgadget: Future of Global Rare Disease Treatment Market by 2016 – 2024
It is estimated that, approximately 5% of the global population suffer from a rare disease and half of the global population affected by… Continue Reading
Rare Diseases South Africa: Africa Leadership Award Winner
During the first week of December, Rare Diseases SA’s CEO, Kelly du Plessis, travelled to Mauritius for the Africa Leadership Awards. … Continue Reading
Guide to Donating Blood: What to Know Before You Go | FIX.com
Thanks to FIX.com for sharing this piece. Donating blood can be a scary thought. The idea of the needle alone might make you squirm and… Continue Reading
Vertex Announces New Scholarship Contest, Ready to Accept Submissions
Vertex Pharmaceuticals has announced the launch of “All In for CF Scholarship,” a new program for patients with CF and/or their family… Continue Reading

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