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Highlights from the World Orphan Drug Congress 2014

Posted by | 9:22am on Thursday, May 15, 2014 | No Comments

view collaboration as a four-legged table in order to gather support, drug approval and access 

The World Orphan Drug Congress (WODC) brings together patient organizations and industry leaders, researchers and academics, members of the FDA and Congress, and many other active individuals in the rare community.  On an annual basis, WODC offers attendees an opportunity to make new connections and review the latest topics in advancing awareness and treatment of rare disorders. The discussion topics were wide ranging, covering innovations in genomic testing and diagnostic tools, clinical research outcome identification, pathways to approval for new therapies, granting early access and globalizing access to treatment. One consistent message that radiated throughout was the need for collaboration to make progress.

Trends in the Orphan Space
Stephanie Okey, MS, Head of North America, Genetic Diseases and SVP, General Manager US Genetic Diseases at Genzyme, delivered a keynote address focusing on trends in the orphan disease space.  She cited the importance of perspective, people, and communication. With increased costs in health spending, there are still major gaps in specialty support of the majority of conditions. Rare diseases need people, particularly patients, to bring attention to these gaps. Communication allows for people to share their perspectives, growing knowledge about the disease, which can build specialty support and pave the way for treatment options and access. Read More


Hope for Huntington’s Disease

The Huntington’s Disease Society of America (HDSA) recently gathered patients, caregivers, providers, and other advocates for the 28th Annual Convention…

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