Join us Friday, November 13, 2026

We are excited to announce that the Pitt Hopkins Research Foundation will host an Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting with the U.S. Food and Drug Administration (FDA).

This important meeting is an opportunity for individuals with Pitt Hopkins syndrome, their families, caregivers, clinicians, researchers, industry partners, and FDA representatives to come together and discuss what it is truly like to live with Pitt Hopkins syndrome. The focus is on hearing directly from our community about the symptoms and daily challenges that have the greatest impact, current treatment experiences, and what families hope to see in future therapies and clinical research.

To make participation as accessible as possible, the meeting will be held virtually, allowing families from around the world to join, share their experiences, and ensure the voices of the global Pitt Hopkins community are represented.

The insights shared during this meeting will help create a Voice of the Patient Report, a document that captures the experiences and priorities of the Pitt Hopkins community. This report can be used to help inform future drug development, clinical trial design, and regulatory decision-making, ensuring that the patient and caregiver perspective remains at the center of future treatments.
We encourage every Pitt Hopkins family to participate. Whether you choose to share your personal experiences or simply listen, your presence helps demonstrate the strength and diversity of our community. The more voices represented, the more meaningful and impactful this meeting will be.

Additional details, including the meeting agenda, speakers, and participation information, will be shared as the event approaches. An RSVP link will also be available at a later date so we can plan accordingly..

If you have any questions in the meantime, please contact us at information@pitthopkins.org.

We hope you’ll save the date and join us for this important milestone as we work together to advance research and future treatment options for everyone affected by Pitt Hopkins syndrome.