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2023 PWS Research Symposium - Sharing Progress, Fostering Collaborations

Connecting Minds, Advancing Science: A Chronicle of the Annual PWS Research Symposium

One of the most important roles FPWR serves is that of a ‘convener’, bringing together those with an interest in advancing the science of PWS, and the care of those living with PWS. On Oct 5-6, 2023, FPWR held its annual PWS Research Symposium – our largest yet. More than 160 scientists, physicians, health care professionals, and pharmaceutical industry scientists from around the world came together to share updates on their work, exchange ideas, and plan how best to advance our understanding of PWS and apply that knowledge to effectively treat the disorder.

This conference was notable for the breadth of the science presented – more than 55 oral and poster presentations covered everything from the molecular genetics of the PWS genes to molecular mechanisms of disease, to the testing of new potential therapies in PWS animal models, as well as the results of clinical trials evaluating the safety and efficacy of new drugs in people with PWS. Many of the studies applied the most cutting-edge technologies – for example, employing single-cell sequencing, genome-wide analyses, 3-D organoids (‘brain in a dish), artificial intelligence, and ‘digital twins’. Again and again, we heard from attendees how they appreciated the opportunity to engage with other experts in the field, and how productive their conversations were. They spoke of how they would be returning to their labs with new insights, and in many cases, with new collaborations to speed the research process. The program from the PWS Research Symposium, with all of the abstracts from the presentations, is available for download by clicking below.

Download the 2023 Research Symposium Abstract Booklet


Just as important as the research symposium itself, is the opportunity for groups with shared interests to gather at our ancillary meetings held before and after the conference. In this case, those meetings included a half day for the PWS clinicians and healthcare professionals who are part of the PWS–Clinical Investigation Collaborative (PWS-CLIC)   to discuss initiatives to improve the care of individuals with PWS across the lifespan; a meeting of the PWS Clinical Trials Consortium to discuss progress on efforts to improve the efficiency of PWS clinical trials; a meeting of investigators who will be participating in the VNS4PWS study, and the “MAGEL2 Roundtable”, where scientists were able to share ideas and coordinate efforts to understand this critical PWS-region gene. These opportunities for collaboration are extremely valuable for our overall goal of accelerating the development of new treatments for PWS and ensuring the optimal care of all individuals with PWS.

Given the success of this year’s meeting, we will be expanding the Research Symposium to two full days of oral presentations next year, and will include additional opportunities for special interest groups to meet and discuss scientific and clinical topics of interest. As always, the family conference following the scientific meeting will include a ‘family-friendly’ recap of the highlights of the scientific symposium and opportunities to hear from some of the scientists/clinicians themselves about what they are working on and what they are excited about for our kids.

We look forward to seeing you in Atlanta, September 25-28, 2024!



Topics: Research, Learning

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.