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NF Patient Advocates Speaking Directly to the FDA Today

By June 13, 2019January 17th, 2024Press Release

This afternoon, six NF patients and caregivers will share their experiences of living with neurofibromatosis (NF) in the first-ever NF listening session at the U.S. Food and Drug Administration (FDA). The audience will include staff members from the FDA’s review division and Patient Affairs. The speakers include NF parent Maureen Hussey, speaking on behalf of her daughter Maggie, and NF patients Jack Burke, Jesse Sorman, Brianna Worden, McKinnon Galloway, and Aidan Fraser. They will also be joined in the conversation with the FDA by Children’s Tumor Foundation representatives Annette Bakker, President; Traceann Rose, Patient Engagement Director; and Pam Knight, Clinical Program Director. This meeting is taking place because of a collaboration with the National Organization of Rare Disorders (NORD).

The goal of the listening session is to serve as a resource for the FDA medical product centers to engage with patients and patient advocates. This face-to-face meeting of NF patients with representatives from multiple centers at the FDA will facilitate the sharing of NF patient perspectives on disease burden, treatment burden, impact on daily activities, quality of life, and priorities to consider in medical product development programs. The objectives are to inform regulatory decision-making, educate review staff about NF, help patients understand the FDA’s mission and work, and provide a starting point to inform research & development.

In his presentation today, NF patient Jesse Sorman reveals that he summoned tremendous courage to face his fear speaking publicly:

“Standing in front of you today is really outside of my comfort zone and I almost didn’t even do it. I am here because it’s important for you to know how difficult this is for me, so that when you’re making a decision about approving a drug that could help people with NF, you will remember that I shared my struggles with you.”

Also in attendance today in the audience are Debbie Drell, Director of Membership, National Organization for Rare Disorders; Elizabeth O’Brien Burke, Patient Advocate and Jack’s mom; Connie Sorman, Senior Manager, Stewardship and Volunteer Development at CTF and Jesse’s mom; Janna Walter, Patient Advocate and Brianna Worden’s mom; and Jayce Daniel Walter, Brianna’s sibling.

The output of today’s session will be a high-level summary report that highlights the key themes discussed, and takeaways to be shared both FDA-wide and with the public. We will share further details about this meeting as they become available at