Guillaume Guillard Honored for Innovative Solution for the Rare Disease Community

Chicago, Illinois - December 30, 2025 – Chion Foundation has awarded its inaugural Innovative Solution for the Rare Disease Community to Guillaume Guillard for developing a financial plan to build an ecosystem of privately held homes for Prader-Willi Syndrome (PWS) which enables adults with PWS to create an individualized and evolving balance of independence and community. The model establishes a system of homes that provide scaffolding and support for adult living, food security, and 24/7 care. It creates efficiencies to drive a self-sustaining solution that can be replicated, providing a safe and flexible platform for individuals with PWS to create meaningful lives.

Chion Foundation, formed in 2016, leveraged innovation to identify pitolisant as a treatment for sleep problems in PWS and published the first patient-initiated real-world evidence in the medical literature. Now, ten years later, the PWS landscape has changed: pitolisant is in phase 3 trials; extended-release diazoxide choline has been approved for extreme hunger in PWS; and ARD-101, RGH-706, cannabidivarin (CBDV), setmelanotide, and others are under development. As pharmaceutical solutions materialize, Chion Foundation realizes that innovation must be applied to the non-pharmacological problems that are coming to the foreground. Chion Foundation has created the Innovative Solution award to highlight individuals and groups working outside traditional rare disease organizations to develop overlooked solutions to such non-pharmacological problems.

Mr. Guillard has launched the first “LetGo” house in Phoenix, Arizona, with two residents in their twenties who are thriving in an ecosystem that protects both their safety and their families’ financial future. He is now seeking a third housemate (rent is $1,000/month) and investors to expand the community and social environment, thereby driving efficiency gains in caregiver and utility costs.

“Our first experience looking for a home was pretty traumatic,” explains Wendy Higgins, mother to Lexi, a resident of the LetGo house. “It has not been easy to do… The experience moving into the LetGo house has been bumpy, as all things with PWS are, but better than expected, and we are grateful for Guillaume and are looking forward to the future.”

Hyperphagia has always been a considerable barrier for individuals with PWS. As new pharmaceutical solutions make it easier to live without perpetual hunger, other obstacles to a meaningful life have become more apparent and require solutions. Adults with PWS have expressed a desire for meaningful relationships, hobbies, and work. Unfortunately, for most, their living arrangements do not make these things possible. This is because the United States’ scant patchwork of costly private properties and state-run residential facilities has created a “Missing Middle” crisis for PWS young adults and their families who cannot afford to purchase independent homes for adults with PWS and may not have access to the limited number of established residential homes available for PWS. By leveraging environmental design and proprietary “Staffing Synergy,” the “LetGo” ecosystem provides an innovative solution to this significant problem.

Chion Foundation, a 501(c)(3) formed in 2016, is committed to improving the quality of life for families affected by PWS and other rare diseases. We are pleased to recognize Mr. Guillard for his rare pairing of financial expertise and lived insights from the PWS community and welcome him as a much-needed innovator.

For further information, please visit www.chionfoundation.org or contact Lara Pullen at lara@environmentalhealthconsulting.com.