Patient Story and Film: PWS and the Hope for Expanded Treatment Options

Guillaume Guillard will discuss how new drugs are transforming the lives of individuals with Prader-Willi Syndrome (PWS) and what that means for their future. Guillame has worked closely for years with the family of Kian Pullen who has PWS. The Chion Foundation recently awarded him the Innovative Solution for the Rare Disease Community award for his work to establish an ecosystem of homes for adults with Prader-Willi Syndrome (PWS) which balances independence and community. Joining Guillaume in discussion will be the perspective of the biotech companies driving research on ASMD forward and how they work together with patients and advocates. The discussion will be moderated by Daniel DeFabio, co-founder of Disorder: The Rare Disease Film Festival. Daniel is a patient advocacy professional and dad to Lucas who lived with the rare disease Menkes Syndrome. The discussion follows a screening of the nine-minute film “A New Treatment Approach to PWS” from The Disorder Channel. About the Film: “A New Treatment Approach to PWS” Dr. Lara Pullen, an immunologist and medical writer, discovers repurposing an existing drug can be a new approach to treating the symptoms of Prader-Willi Syndrome in her son Kian and others with PWS.