Rare Disease Week - Association for Creatine Deficiencies

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Rare Disease Week

July 14, 2021 @ 8:00 am - July 22, 2021 @ 5:00 pm MDT

Rare Disease Week is July 14-22. EveryLife Foundation invites you to attend virtually on Capitol Hill this year. By attending and participating in different events, you will have the opportunity to meet and network with rare disease advocates from across the country and your own state, share your rare disease story and meet with your Members of Congress and/or their staff, and earn points for participating in Rare Disease Week. The top 50 point-earners from the week will win a grant from $1,000 to $5,000 each for their rare disease organization of choice, totaling $100,000 awarded by the EveryLife Foundation.

To see a detailed agenda and to register, click here.


July 14, 2021 @ 8:00 am MDT
July 22, 2021 @ 5:00 pm MDT

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