Topics: Research
Sleep disturbances and daytime sleepiness severely impact the quality of life for many with PWS, as well as their parents and caregivers. Within the Global PWS Registry, about 50% of respondents report that their loved one suffers from excessive dayt...
I’m a mom so you know my memory is full of as many holes as Swiss cheese. I can’t remember much of anything that took place more than 5 years ago. On particularly fine days, I may be lucky to remember something that was said within the past 5 minutes...
Topics: Stories of Hope
In contrast to many rare diseases that can be traced to a single gene, PWS involves a region of DNA that encompasses numerous genes. A lot of PWS research is centered around trying to connect the dots between the genes in the PWS region and the actua...
Topics: Research
Janet Woodock, MD, Director of the Center for Drug Evaluation and Research at the FDA, recently highlighted how the FDA is placing a high priority on patient input and perspective in the drug development process. The agency recognizes that patients, ...
Topics: Research
When I was pregnant with Lily I had all of these dreams of what it would be like to have a baby. I read all of the books on parenting I could get my hands on; books about what to expect while I was expecting, how to have the happiest baby on the bloc...
Topics: Stories of Hope
FPWR community, 2016 was yet another remarkable year for Prader-Willi research! Our supporters have allowed FPWR to fund more research than ever before, taking us closer to treatments for our loved ones with Prader-Willi syndrome. Read below for a fe...
Topics: Research
Over the past 3 years we have seen a number of new companies investing in Prader-Willi Syndrome. This is in part because of PWS's orphan indication and the significant unmet medical need, but is also reflective of the steps we have taken as a communi...
Topics: Research
Over the past 3 years we have seen a number of new companies investing in Prader-Willi Syndrome. This is in part becuase of PWS's orphan indication and the significant unmet medical need, but is also reflective of the steps we have taken as a communi...
Topics: Research