Executive Director Letters

April 2021

April 17, 2021

Our fundraising events are incredibly special.  While they do seek to bring together the community to raise funds for research and other important programs the Association runs, the emphasis at…

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March 2021

March 17, 2021
Everyday Life Foundation Community Congress logo

One of the ways we can propel progress is through advocacy. It seems impossible, to be able to sit with legislatures and policy makers, and to drive forward new processes and…

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February 2021

February 17, 2021
nord

The National Organization for Rare Disorders (NORD) is an incredible group of individuals, dedicated to support the needs of patients, families, and organizations impacted by rare diseases and conditions. Last year, we…

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January 2021

January 15, 2021
Happy New Year

What can I say…? Last year was filled with challenges, and while as a rare disease community and organization we are familiar with challenge, last year proved difficult for us all.  Looking back on 2020, I am…

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