Share Your Rare Story

In honor of Rare Disease Day on Saturday, February 28, PWSA | USA invites families to Share Your Rare and help us spotlight the strength, love, and resilience within the Prader-Willi syndrome community. We’ll be featuring submissions on our social media pages and in our Pulse newsletter throughout February. Share anything that feels meaningful to you — your diagnosis journey, advice for other families, how you’re raising awareness this February, or simply a shout-out to your loved one living with PWS. And if you’re comfortable, don’t forget to include a photo! Your story can inspire hope, build connection, and help others feel seen.

Name:
First Last
State you live in:
I prefer to remain anonymous.
Share Your Rare Story:
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*If you're willing, upload a photo of your loved one living with PWS.
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, podcast, and/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.
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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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