Your Voice Matters: Attend the FDA’s Externally-Led Patient-Focused Drug Development Meeting at PWSA | USA’s 37th National Convention

In an effort to bring together the PWS patient voice, PWSA | USA, IPWSO and FPWR are excited to host the first FDA Externally-Led Patient Focused Drug Development (EL-PFDD) meeting for the Prader-Willi syndrome community. You won't want to miss this impactful event at PWSA | USA's 37th National Convention, June 21-24, 2023, in Orlando, FL. The EL-PFDD meeting itself will take place Thursday, June 22, 2023, from 12:00 - 4:30 p.m. and all are welcome to attend, free of charge with lunch provided. You will be prompted to select to attend the EL-PFDD meeting while registering for the 2023 National Convention.

PWSA | USA Taking Action:

In September 2022, an in-person meeting (the first in-person meeting of ANY organization since the onset of COVID-19) was held with high-ranking members of the FDA (CDER Division) who oversee the department that evaluates potential therapies to treat PWS. 

The outcome of that meeting was the suggestion by the FDA to hold an Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). The FDA explained this program was developed 12 years ago to assist patients and patient advocacy groups to help document the real, unmet needs of their communities. 

Now that we have been approved to host this meeting, we look forward to the opportunity for our community's voice to be heard! The EL-PFDD meeting on June 22, 2023, will include patient testimonials, as well as remote audience participation. The meeting agenda will focus on two patient panels and audience discussion sessions on living with PWS, treatments for the disease, and potential clinical trials for PWS. If you are unable to attend this meeting in-person and would like to provide a written testimonial, submissions will be accepted until June 9, 2023, and can be sent to

To find more details about the EL-PFDD meeting, click here to read PWSA | USA's full press release announcement. Your voice matters and we look forward to seeing you there!

The EL-PFDD meeting can be attended in-person or virtually. More details to come.


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