Rare Disease Report

Marjorie Guthrie's Impact on Rare Disease Advocacy

OCTOBER 16, 2017
Louise Vetter

The National Organization for Rare Disorders (NORD) is hosting its annual summit this week, and Rare Disease Report is well-represented at the event.

In this video, Louise Vetter, President and CEO of the Huntington’s Disease Society of America (HDSA) talks about Marjorie Guthrie’s impact on the rare disease community and the creation of NORD.

Vetter: I think what’s really inspiring about Marjorie Guthrie is how big she dreamed. She didn’t look to just create change for families in New York City, New York State, or the United States. She thought about everyone – worldwide – who was affected by Huntington’s disease, and by rare diseases. When she started the committee to combat Huntington’s disease back in 1967, she quickly sought to bring others into her fight and to connect with other rare disease leaders who were similarly going to Capitol Hill to try and find support for education and science and removing barriers to families. That impact is still felt today.

Marjorie Guthrie was part of a small team of leaders who created the National Organization for Rare Disorders, what we know as NORD, and she also founded the International Huntington’s Association. In so many ways, she created that global movement of patient advocacy that has really has, I think, galvanized the families and created change and access to care that didn’t exist before she dreamed so big.


For more on the HDSA, visit the organization’s website: HDSA.org.

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