Menu

Two Research Studies Looking for Participants

Hello from the PRETEND/Telehealth team at Case Western Reserve University! We are excited to say that we are gearing up for another enrollment trip for our ongoing studies on Prader-Willi syndrome, this time in San Antonio, TX. We will be there from Wednesday March 8 through Saturday March 11.We are recruiting families with children with PWS 3-11 years […]

read more

PWSA (USA) ADVOCACY ALERT NETWORK SEEKS MEMBERS

The PWSA (USA) Advocacy Committee is seeking interested persons to participate in the newly created Advocacy Alert Network. Persons who join the Network will be notified by Committee members of pending legislative issues affecting PWS and be provided with a model email or letter that can be used to contact legislators regarding the issue. In […]

read more

Registration For PWSA (USA)’s 34th National Convention Is Now Live

PWSA (USA)’s 34th National Convention Is Now Open For Registration! November 15 – 18, 2017 Caribe Royale | Orlando, Florida We invite you to come check out our 34th National Convention registration page by clicking on the button below. With the hottest topics and the biggest names in the PWS community, you won’t want to miss out on what […]

read more

PWSA (USA) approves grant: Profiling of the gut microbiome in children with PWS

Profiling of the gut microbiome in children with PWS Principal Investigator – Andrea M Haqq, MD, MHS, FRCP University of Alberta, Canada   ABSTRACT Individuals with a genetic condition called Prader-Willi Syndrome (PWS) are at risk for development of obesity at a young age. Children with PWS often have a very high food intake because […]

read more

The Night we told Ryan he has Prader-Willi Syndrome

When is it the right time? At what age? At what cognitive level?  Will he even understand?  Will it make him more anxious? (Because EVERYTHING does.) Will he just perseverate on it and talk about it over and over and over?  Or will it bring relief—as in “oh, now I understand why I talk about […]

read more

Important Medical Growth Charts

PWSA (USA) Growth Charts Now Available! A child’s growth is the single best indicator of their health – important data for every pediatric appointment. For children with Prader-Willi Syndrome, the pattern is not typical, and interpreting each height and weight can create questions and worries for parents and professionals. With the support of PWSA (USA) […]

read more

Only 36 hours are left!

That’s right, you can still make a tax-deductible gift in 2016, and have it tripled, thanks to the generosity of a group of donors who will double match all donations through midnight, December 31 (up to $40,000 total). Your $100 gift immediately becomes $300 and your $250 donation immediately becomes $750! Your gift now will Save and Transform Lives in 2017. Help […]

read more

PWSA (USA) Approves Grant

We are pleased to announce that PWSA (USA) has approved the funding of an important grant: The Effect Of Growth Hormone Substitution On Sleep Disordered Breathing In Young Children With Prader-Willi Syndrome. The researchers have committed that the results will be in a report that could be helpful with physicians and private/ public insurance companies. […]

read more
Showing 1 to 8 of 98 results
  TOP