Did you know that PWSA (USA), which is funded through our “On The Move” activities and other donations, provides for the most extensive support services for families and people with PWS in the world. In addition to Research, PWSA (USA) provides the following Family Support Services:

  • A Package of Hope, opportunity to work with a parent mentor and 1 year free membership to parents with children who are newly diagnosed. New Document added 12/2013 NICU Information [Click here]

  • An extensive medical collection of information on our website and publications that families, as well as professionals and supported living providers can access.

  • Advocacy for medical support, growth hormone approval, school issues, and placement.

  • Assistance to parents and educators with IEP’s, ISP’s and educational material for all involved with a child or adult who has PWS.

  • Interaction with medical and other professionals to try to prevent and if necessary handle urgent and/or crisis cases in a timely and effective manner.


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.

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Please enjoy the wealth of information contained on our website and contribute to our cause. If you would like to contact our office, please call (800) 926-4797 or email info@pwsausa.org. We are here to help you.

In the spotlight

  • Seeking Clues to Obesity in Rare Hunger Disorder  One drug being developed for weight loss has been tested in patients with Prader-Willi syndrome and other studies are in the wings.
  • Ken Smith named Executive Director.  [Click Here]
  • Just Released - GI Gastroparesis: The Newest Threat. Download the article today.
  • PWSA is excited to announce that we are currently working on our new National website. Stay tuned within the next couple months for a new redesigned website.
  • On The Move: We hope you are as excited as us for 2014 “On The Move”! We wanted to let you know about a couple new things going on this year.  Click here to learn more..

  • Living with Prader-Willi syndrome - Abbott Philson
    Published on Feb 4, 2013 - PWSA (USA) Advisory Board Member, Abbott Philson tells what Prader-Willi syndrome is and describes his experiences living with this challenging syndrome. [Click here] to see the Video

  • Flu Season is Here -- What Should We Do?  Click here for details.

  • Understanding the complexities of hyperphagia and obesity: Several of the world renown researchers who gave presentations at our International Hyperphagia Conference have given permission for us to put their presentation our the PWSA (USA) web site. To view go to www.hyperphagia.org

  • Grants funded by PWSA (USA) during 2012.  Click here for details.

  • Prader-Willi Syndrome (PWS): Clinical Trials
    The NICHD conducts and supports a variety of clinical research related to Prader-Willi syndrome. Select a link below to learn more about these projects.  Click here for details.
  • Looking after someone with Prader-Willi Syndrome (PWS) is a full time job! FamCare, a newly appointed committee of IPWSO (the International Prader-Willi Syndrome Organisation) has been established to assist and support families who are caring for their adult children with PWS in the family home.  Please help by doing the survey [Click here]
  • Photos needed!  [Click here] for details.
  • Weight Loss Drug Approved by FDA [Click here] for details
  • Early-onset Morbid Obesity (EMO) Recruitment through the PWS-EMO Rare Disease Natural History Study funded by NICHD.  Click here for more information.
  • Clinical Trials on Oxytocin for PWS Are Moving Forward!  For more details [click here]PWSA (USA) Logo items for sale [click here]
  • Front Page News Archive   Items formerly on our front page that cannot be found elsewhere on our site may be kept in a news archive.


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Click here if you are not in the USA.



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