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January 2021

Rare Disease Legislative Advocates’ January Webinar

January 28 @ 12:00 pm - 1:00 pm

The Rare Disease Legislative Advocates' Monthly Webinar January 28, 2021 This months' webinar from the RDLA will focus on the policy priorities of the Everylife Foundation for year 2021, as well as the policy priorities for the Personalized Medicine Coalition. Specific goals to be discussed in this webinar include Cures 2.0, the Medical Nutrition Equity Act, and newborn screening/diagnostics. Click here to get signed up.

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March 2021

National Institutes of Health’s Virtual Rare Disease Day

March 1 @ 10:30 am - 5:30 pm

Rare Disease Day at NIH March 1, 2021 Rare Disease Day is held every year to help raise awareness surrounding rare diseases and the people that are impacted by them. The event also aims to inform the public about the ongoing research collaborations involving the NIH that are vital to improving the lives of patients. While this year's event will be hosted virtually due to the ongoing COVID-19 pandemic, it will still include the sharing of rare disease stories, interactive…

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Global Genes and the EveryLife Foundation’s Rare on the Road 2021: A Rare Disease Leadership Interactive Webinar

March 3 @ 11:00 am - 1:30 pm

RARE on the Road 2021: Rare Disease Leadership Tour A Rare Disease Leadership Interactive Webinar March 23, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include this interactive webinar and three in-person events. The in-person events will be held in accordance with local laws…

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May 2021

Global Genes and the EveryLife Foundation’s Rare on the Road 2021: In-Person Training and Networking

May 1

RARE on the Road 2021: Rare Disease Leadership Tour In-Person Training and Networking Las Vegas, NV May 1, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include an interactive webinar and three in-person events. The in-person events will be held in accordance with local…

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Global Genes and the EveryLife Foundation’s Rare on the Road 2021: In-Person Training and Networking

May 15

RARE on the Road 2021: Rare Disease Leadership Tour In-Person Training and Networking Miami, FL May 15, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include an interactive webinar and three in-person events. The in-person events will be held in accordance with local laws…

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Global Genes and the EveryLife Foundation’s Rare on the Road 2021: In-Person Training and Networking

May 22

RARE on the Road 2021: Rare Disease Leadership Tour In-Person Training and Networking Chicago, IL May 22, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include an interactive webinar and three in-person events. The in-person events will be held in accordance with local laws…

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