GFPD Advocates attend Rare Disease Week in Washington, D.C.

February 22, 2019

​The mission of the GFPD is to improve the quality of life for families facing peroxisomal disorders and make strides toward meaningful research that can help improve the quality of life for these families. One of the ways we are accomplishing that mission in 2019 is by taking a team to Washington, D.C. for Rare Disease Week, February 25-28th.

 

Our team includes parents of individuals with peroxisomal disorders including, Katie and Ted Sacra, Corin Chapman, and Chris Ostertag, GFPD friend Julia Ridgway, and GFPD Board Member David Lapidus.

Through the generosity of the EveryLife Foundation, members of our team will have the opportunity to fulfill the GFPD’s mission by advocating on Capitol Hill for crucial initiatives that will impact our families in years to come.   

The week of February 25-28, the GFPD Rare Disease Week Team will:

        • Monday 2/25 - Participate in Rare Disease Week Legislative Conference on
        • Tuesday 2/26 - Visit Legislators on and advocate for:
            • Expanded NIH/FDA Funding
            • Re-authorization of the Newborn Screening Saves Lives Act
            • The Rare Disease Congressional Caucus
            • Aidan’s Law
        • Wednesday 2/27 - Attend Rare Disease Congressional Caucus meeting on
        • Thursday, 2/28 - Participate in Rare Disease Day at the NIH Clinical Center

Follow our team all week on Instagram @thegfpd and Twitter/Facebook @globalfoundpd as we post updates and share successes and all that we are learning!

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