In Case You Missed It!
EL-PFDD Meeting for iTTP
The Ree Wynn Foundation hosted the first EL-PFDD Meeting for iTTP on January 26th.
View the video, On Demand, and submit your comments to be included in the Voice of the Patient Report.
The goal of this meeting was to provide the U.S. Food and Drug Administration (FDA), product developers, clinicians, and academic researchers an opportunity to hear perspectives from individuals with iTTP on the health effects and daily impacts of their iTTP, treatment goals, and decision factors considered when seeking out or selecting a treatment.
This meeting was conducted as a parallel effort to FDA’s PFDD initiative to more systematically gather patients’ perspectives on their conditions and available therapies to treat their conditions.
The EL-PFDD was half-day event. It focused on patient voices through panel discussions.
In Case You Missed It!
iTTP Community Webinar
The Ree Wynn Foundation hosted a Community Webinar on January 4, 2024. The event took place over zoom and was attended by 40 people. The audience consisted of patients with TTP, caregivers of patients with TTP, physicians, medical professionals and Pharmaceutical Industry partners. James Wynn of RWF along with James Valentine and Larry Bauer of Hyman, Phelps and McNamara; facilitate a discussion and question and answer period that prepares the community for the upcoming Externally-Led Patient Focused Drug Development Meeting. The EL-PFDD will be held Friday, January 26, 2024.
The Community Webinar answers questions from the community related to the EL-PFDD. Questions such as What is an EL-PFDD? What is TTP? Who should participate in the EL-PFDD? What is the role of FDA? How can I help with iTTP? Should my doctor attend the EL-PFDD? And many more. Watch the video above.
The Ree Wynn Foundation Announced the First EL-PFDD for iTTP
Externally-Led Patient-Focused Drug Development (EL-PFDD) meetings give FDA and other key stakeholders, including medical product developers, health care providers, federal partners, an important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact the disease has on patients’ daily lives, and patients’ experiences with currently available treatments. This input can inform the FDA’s decisions and oversight during drug development.
On January 26, 2024, The Ree Wynn Foundation will host the Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting.
The goal of this meeting is to provide the U.S. Food and Drug Administration (FDA), product developers, clinicians, and academic researchers an opportunity to hear perspectives from individuals with iTTP on the health effects and daily impacts of their iTTP, treatment goals, and decision factors considered when seeking out or selecting a treatment. This meeting is being conducted as a parallel effort to FDA’s PFDD initiative to more systematically gather patients’ perspectives on their conditions and available therapies to treat their conditions.
The EL-PFDD is a half-day event that spans 4-5 hours. It will focus on patient voices through panel discussions.
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