EL-PFDD Testimonial

Your voice matters! PWSA | USA, IPWSO, and FPWR are working to bring the PWS patient voice together for a historic FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). The EL-PFDD meeting will take place during PWSA | USA's 37th National Convention on Thursday, June 22, 2023 from 12:00 - 4:30 p.m. EST. in Orlando, FL. Ahead of the event, we are collecting testimonials from our PWS community. You can share your personal story, the struggles your family and loved one living with the syndrome have faced, or anything else you want others to consider. These testimonials will be included in our Voice of the Patient Report, which becomes published papers. This will allow pharmaceutical companies access to the report so they can develop protocols that best fit our community's needs. Meaning, with this report, WE can help with the development of drugs to help our entire community. Testimonials will be accepted for the Voice of the Patient Report through June 9, 2023. We believe it is important for our PWS community to also attend the meeting, if you can, in an effort to show strength in numbers. You can select that you will be attending the EL-PFDD meeting while registering for PWSA | USA's 2023 National Convention (https://pwsausaevents.cventevents.com/37thPraderWilliConvention). We hope to see you there!

Your Name:
Your Email:
Your Phone Number:
Your loved one living with PWS name and age:
What state do you live in?
Share your testimonial here (no more than 800 words)
Please note: Your entire quote may not be used
If you're willing, add a photo of your loved one living with PWS
(This photo would be displayed with your quote in PWSA | USA's Voice of the Patient Report)
Consent
I agree to PWSA | USA's Media Consent Policy
By clicking here, I hereby authorize and grant my full permission to Prader-Willi Syndrome Association | USA (PWSA | USA) to collect, use and store any of my personal information, including, without limitation, my likeness, image, voice, and/or statements (“the personal information”) for posting on the PWSA | USA website or social media pages, to use for printed publications or for other purposes that may convey my identity (names may be used unless otherwise specified), diagnosis and other information.

I acknowledge that:

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2. I understand that the personal information provided to PWSA | USA may reveal sensitive health information about me, including health conditions, diagnosis, and treatment.
3. I understand that any personal information I share with PWSA | USA may be included in various media, including, without limitation, print and digital media, audio and video recordings, photographs, and written statements.
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5. I understand that I may revoke this authorization at any time by sending an email to PWSA | USA at events@pwsausa.org which identifies the information covered by the revocation. Upon receipt of this notice, PWSA | USA will endeavor to stop using this information within a reasonable time after receipt of such notice.
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