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:
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A Package of Hope, opportunity to work with a parent mentor and 1
year free membership to parents with children who are newly diagnosed.
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An extensive medical collection of information on our website and
publications that families, as well as professionals and supported living
providers can access.
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Advocacy for medical support, growth hormone approval, school issues, and
placement.
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Assistance to parents and educators with IEP’s, ISP’s and educational
material for all involved with a child or adult who has PWS.
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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.
Información en Español
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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
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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
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Flu Season is Here -- What Should We Do?
Click here for details.
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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
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Grants funded by PWSA (USA) during 2012.
Click
here for details.
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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
- News from the PWSA (USA)'s Board of Directors
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]
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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 to renew or become a member!
Click here if you are not in the USA.
Calendar of Events
Participants Wanted for Research Projects!
click here for details.
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