by Shelly Cordner | Dec 9, 2025 | Blog
A Personal Reflection by Salman Shaban, Qatar When my daughter, Soha Shaban, was diagnosed with Prader–Willi Syndrome in 2011 soon after her birth, my world shifted in ways I never expected. What began as a journey filled with uncertainty gradually transformed into...
by Shelly Cordner | Oct 23, 2025 | Blog
While in Hanoi for the Sydney University Học Mãi Australia-Vietnam Foundation educational partnership aiming to improve health outcomes through education and research in Vietnam, Nick Finer, president of IPWSO and his colleague Professor Ian Caterson (Boden Professor...
by Shelly Cordner | Oct 15, 2025 | Blog
The following is an article shared by a group of young adults with PWS established in 2023 in Löhne, Germany. They meet regularly to discuss topics like leisure, relationships, living, and equality. They aim to represent people with PWS in IPWSO and promote greater...
by Shelly Cordner | Sep 26, 2025 | Blog
Francie Thornton 1984-2025 We were very sad to receive the message a few weeks ago that Francie Thornton, daughter of Linda and Nick Thornton, New Zealand (NZ) had died aged 40. Francie was the youngest of three sisters and had the diagnosis of PWS at the age of four...
by Shelly Cordner | Apr 29, 2025 | Blog
This month we held an important meeting, inviting PWS Associations and stakeholders from around the world to discuss the potential for global access to VYKAT™ XR (DCCR) for treating hyperphagia in people with PWS. The session focused on the process of bringing...
by Shelly Cordner | Mar 27, 2025 | Blog
Beat the Heat in Arizona! As we count down the days to the United in Hope: International PWS Conference in Phoenix, AZ, our excitement at gathering with many families from the PWS community grows! We’ll be spending time with old friends, making new ones, and...
