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Gillian Sapia

Advocacy Lead
As a patient advocate for Galactosemia Foundation, I work with a team of dedicated professionals to raise awareness and support for Galactosemia, a rare genetic disorder that affects the metabolism of galactose, a sugar found in milk and dairy products. I engage and educate caregivers on rare disease advocacy, partnering with organizations such as Everylife and Haystack Project to influence policies and regulations that affect the rare disease community. I also collaborate with other rare disease groups to learn and share ideas and best practices.
My core competencies include chronically critically ill, addiction recovery, ICU, and patient recruitment. I am passionate about making a positive impact on the lives of people living with rare diseases and their families, and I believe that I can bring diverse perspectives and experiences to the team. I am motivated by the opportunity to leverage my skills and knowledge to help the Galactosemia Foundation achieve its mission and vision.

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