Alaska Rare Action Network

We had the pleasure of meeting with Erin Stuart, Staff Assistant for Alaska Senator Dan Sullivan. Another great meeting on the hill, advocating for individuals and families affected by rare disease.

FYI!

Next week, we will welcome over 800 rare disease advocates to Washington, DC for Rare Disease Week on Capitol Hill 2020. If you are unable to come to DC next week, here are ways that you can be a part of Rare Disease Week and participate right from your own home. Please share with your family and friends so they can also take part.

1. Monday the 24th: Watch the FDA's Rare Disease Day Public Meeting livestream https://bit.ly/39UMTZj

2. Tuesday the 25th: Watch the Rare Disease Congressional Caucus briefing livestream https://bit.ly/2PeXuqh

3. Wednesday the 26th: Watch the Rare Disease Week Legislative Conference livestream https://bit.ly/2PfezAf

4. Thursday the 27th: Email and/or call your Members of Congress and ask Congress to support the Rare Disease Community. Take action here--> https://bit.ly/2T9dH14

5. Friday the 28th: Watch the Rare Disease Day at NIH livestream https://bit.ly/39Vfq10

I planned to share what we’re doing for rare disease month the other day but got knocked out with influenza in Vegas! I’ll be sharing and looking for your feedback by the end of the week. So sorry for the delay. Stay healthy! 😷Rene