Posts tagged ‘RDLA’

Upcoming RUN Involved Events and Projects

March 5, 2018 8:40 pm

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  Rare and Undiagnosed Network (RUN), a rare and undiagnosed disease patient advocacy organization, and the rare disease community of more than 350 million people worldwide, are preparing...

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Rare Disease Congressional Caucus Briefing November 15th

November 14, 2017 7:50 pm

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RUN is a proud partner of the Rare Disease Congressional Caucus An accurate diagnosis is usually the first step in developing a treatment plan for a patient, but it...

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RUN is nominated for a Rare Voice Award from the EveryLife Foundation for Rare Diseases

October 31, 2016 8:09 pm

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EveryLife Foundation for Rare Diseases  Nominees Federal Advocacy – Congressional Staff Nico Janssen, Legislative Assistant, Office of Senator Maria Cantwell, Lymphedema Treatment Act Molly McDonnell, Senior Health Policy Advisor, Office...

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Senator Hatch: Thank you for your work on the Open Act!

April 7, 2016 6:32 pm

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Senator Hatch’s remarks from the hearing yesterday: “This amendment contains the provisions of the Open act, a bill I’m sponsoring with Senator Klobuchar to promote new therapies for...

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