Executive Director Letters

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…

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…

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…

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…