PWSA USA Rare Disease Day 2021

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
  • Prompt suggestions: What do you consider to be your most important PWS related achievement or milestone? What challenges did you overcome to accomplish that achievement or milestone? What’s one thing you’re looking forward to in 2021? What are you hopeful will happen in the PWS community in the next decade?
  • #ShareYourRare during Rare Disease Month by uploading an inspirational photo or video of a moment that celebrates your rare loved one! Please keep videos to 15 seconds or less. High-resolution preferred. Acceptable files: .jpg, .jpeg, .png, .gif, .mp4, .m4v (MPEG-4), .mov (QuickTime), .wmv (Windows Media Video).
    I hereby authorize Prader-Willi Syndrome Association | USA to use pictures of me (or my child/ward), testimonial from me (or my child/ward), and my name (or my child/ward) on social media and in other communications. It is also my understanding that I will receive no compensation for my likeness or testimonial.

 

More Ways To Get Involved

Send an email or letter to your lawmakers

Letter/Email template for informing your legislators about Prader-Willi syndrome and Rare Disease Day

As Prader-Willi syndrome is considered a “rare disease,” extra effort is needed to bring attention to the needs of the PWS community. Use this letter/email template to contact your lawmakers about PWS.

Visit our Public Policy Action Center

Visit our Public Policy Action Center and connect with your local senators and representatives to help bring awareness to the needs of individuals with PWS and their families.