Prader-Willi Syndrome Association | USA is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.

Prader-Willi Syndrome Association | USA

Today, February 29, 2024, we celebrate and recognize #RareDiseaseDay 🦓
Rare is many, rare is strong, rare is proud 💜
Share your rare in the comments below by giving a shoutout to your loved one living with PWS or sharing why you advocate!

PWS advocates are ready to get to work at EveryLife Foundation for Rare Diseases’s #RareDiseaseWeek on Capitol Hill! We’re kicking off the event this morning with introductions at the Legislative Conference. Tomorrow, we will divide up by states to attend several meetings with legislative officials and their staffers to share several “asks” from the Rare Disease Community. These include:
- Supporting the creation of an interagency coordinating committee for rare diseases
- Cosponsoring the accelerating kids’ access to care act (HR 4748 / S 2372)
-Cosponsoring the creating hope reauthorization act (HR 7384) 
- Cosponsoring and advancing the safe step act (HR 2630 / S 652)
- Asking members of Congress to join the rare disease congressional caucus 

We look forward to sharing more updates over the next few days! Rare is strong, rare is many, rare is proud 🦓💜

#PWS #EveryVoiceMatters #RareDC2024

Way to go #WalkAMile2024 participants! We can't thank you enough for your efforts 💜 https://lnkd.in/g3TD4KgH

YOU can help us reach our Walk a Mile in their Genes fundraising goal by...
1. Creating a Walk a Mile fundraiser page 💻
2. Supporting our existing participants 🫶

We're 19% of the way there! Funds raised will support PWSA | USA's 2024 advocacy initiatives, including the D.C. Fly-In in May, launching an advocacy specific grant opportunity for the PWS community, assisting state advocates in their PWS State Qualifier Campaign efforts, and more! Create a Walk a Mile page or donate to others through March 18th at https://lnkd.in/g3TD4KgH. Questions? Contact us at hopeunited@pwsausa.org.

We are currently seeking a qualified professional to join our team as the Director of Accounting. In this role, you will be responsible for overseeing the operation and management of the accounting information and control department. Key responsibilities include reviewing and scrutinizing financial information, ensuring adherence to set deadlines, assisting with annual program budgets, assessing organizational progress against the budget, and managing monthly and annual close processes on an accrual basis. If you have a strong background in accounting and are meticulous in adhering to guidelines and procedures, we invite you to explore this opportunity further at https://lnkd.in/g_ZHR_Ur.

To apply, email your resume to sward@pwsausa.org by February 21, 2024.

Acadia Pharmaceuticals Inc. has announced the opening of a new clinical trial site for its COMPASS PWS study (carbetocin nasal spray/ACP-101) at the University of Iowa Hospitals and Clinics – Stead Family Children’s Hospital (Iowa City, IA). Find more information, including contact information and additional trial sites at https://lnkd.in/g9z8zTie.

Learn more about COMPASS PWS at https://compasspws.com/.

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Fausta Deterling

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Stacy Ward

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The Prader-Willi Syndrome Association - USA is a non-profit organization dedicated to improving the lives of and empowering those afflicted with Prader-Willi syndrome.

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The FPWR is dedicated to supporting research and clinical trials for Prader-Willi syndrome treatments.

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IPWSO is committed to supporting all people with Prader-Willi syndrome and their families worldwide.

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Prader-Willi Syndrome Association USA (PWSAUSA) is a nonprofit organization dedicated to supporting individuals with Prader-Willi syndrome (PWS), their families, and caregivers. The association provides medical and educational resources, advocacy, and support networks to improve the lives of those affected by PWS.

Prader-Willi Syndrome Association USA (PWSAUSA)

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Prader-Willi Syndrome Association USA (PWSAUSA)