We are back from Rare Disease Week in Washington, DC!
And do we have some highlights for you below?! Rare Disease Day at NIH was not only informative, but encouraging.
We were also amazed and inspired at the Rare Disease Week Screening of a cystic fibrosis survivor and his plight with CF progression. Lastly, a panel of staff from Capitol Hill gave us their perspectives on the ACA and it’s future in rare disease.
So sit back and enjoy this week’s Editor’s Choice!
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Rare Disease Day at NIH: Hope for Dealing with Emerging Rare Diseases
Infectious and rare disease will always be a problem.
But past experience is informing our approach to this challenge and you can read about it here.
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What is IRDiRC and How Does it Improve the Rare Disease World?
Among the impressive speakers at Rare Disease Day at NIH was Christopher Austin, M.D., Director of the NCATS, NIH and Chair of IRDiRC (International Rare Diseases Research Consortium)
Check out some the info he has for us.
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This Cystic Fibrosis Documentary Will Bring You to Tears
Jerry Cahill, a pole-vaulting coach and CF survivor is the focus of “Up For Air”, a documentary detailing his CF progression over the course of five years.
Read our review of the doc here.
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The Uncertainties of the Affordable Care Act and Your Rare Disease Coverage
With the new administration, the rare disease community is concerned about the future of the ACA.
Read more here to get the latest perspectives.
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