Alira Health

Renee Willmon and MG Registry featured in new Rare Disease Article Series

March 27, 2023

Alira Health’s Senior Director of Evidence and Outcomes Renee Willmon was recently featured in the new Rare Community Profiles series on Patient Worthy®. In the article, “Alira Health and the MGFA Partner to Develop a Myasthenia Gravis Registry,” Renee shares how her professional journey has led her to her current involvement in patient registry development.

Renee Willmon is the Registry Lead on the Alira Health side of the partnership with MGFA, and works with both teams to ensure that MG patients’ experiences are well-represented in the registry and that other stakeholders can access and use the data to improve the development of new treatments, and access to care for MG.

I was really interested in the vision of empowering patients to take a more active role in shared decision-making, the health data they’re generating, and how they can use technology to democratize clinical research."

Patient Worthy® is an online publication that provides relevant information to rare disease patients, caregivers and advocates alike. Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

Read more about the Alira Health and MGFA Partnership.

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