EL-PFDD Testimonial

Your voice matters! PWSA | USA, IPWSO, and FPWR recently brought the PWS patient voice together for a historic FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). The EL-PFDD meeting will took place during PWSA | USA's 37th National Convention on Thursday, June 22, 2023. A recording of the meeting will be available on PWSA | USA's website soon. In addition to what was shared during the meeting, we are collecting testimonials from our PWS community here. 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. Thank you!

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 characters)
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 will be displayed with your quote in PWSA | USA's Voice of the Patient Report. You can also upload a Word document or PDF with a longer quote if you choose.)
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:

1. I have the authority to grant this authorization and I hereby waive any rights of privacy and other cognizable claims which I may have in connection with the use of the personal information on the PWSA | USA website or social media pages, in printed or other publications, or for other purposes. I understand that this consent is intended to release from liability all personnel of PWSA | USA and is valid unless and until revoked as described below.
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.
4. I agree that PWSA | USA shall own worldwide copyright and other intellectual property rights in any work product incorporating the personal information. Under this authorization, I assign and transfer to PWSA | USA full worldwide right, title, interest in and ownership of all copyright and other intellectual property rights in such work product without payment of any fees, royalties or other compensation.
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.
6. I acknowledge that I am signing this authorization voluntarily and that I am not required to sign this authorization as a condition of eligibility to receive any benefits or services from PWSA | USA. I understand that I may refuse to sign this form.
7. If I have any questions about my privacy rights under this authorization, I understand I may contact PWSA | USA by sending an email to: events@pwsausa.org . The terms of this authorization are not linked to any other agreement, nor to the term of any other agreement, and the terms of this authorization will survive until a request for revocation is submitted as described above.