Rare Across America gave FA community members the first opportunity this year to speak directly to their Members in Congress but it won’t be the last! The issues discussed there are likely to be the ones that we see throughout 2021: robust funding for the NIH & FDA, development and access to rare disease therapies, telemedicine, and newborn screening, to name a few. As we move toward the summer and a virtual Rare Disease Week , FARA will continue to stay on top of developing initiatives that could impact FA research. This advocacy newsletter, FARA’s advocacy webpage, and virtual training sessions offered by FARA, and their advocacy partners will all help you get ready for Congressional meetings in July! Join your voice to those creating change!
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