Kathi Luis

Patient Leader

Kathi Luis is a Special Projects Director at the Amyloidosis Foundation, a rare disease-related non-profit. She is a member of the Community Congress, dedicated to bringing patient organizations, industry leaders and other rare disease stakeholders together. The Congress acts as a strategic advisory council, providing advice and insight on urgent policy issues and Foundation programs and initiatives. Kathi is part of the Regulatory Science Working Group, which focuses on improving the drug approval process at FDA and educating patients about the clinical development process. She refers to herself as “Jill of all trades”, as she handles many different things at the foundation, including the annual report, newsletter, planning all of the foundation’s events, social media, advocacy, awareness, advertising, fundraising and patient resources. She spearheaded a bequest program, a caregiver/patient binder, and is passionate about helping those affected by amyloidosis as well as the rare disease community as a whole.


Clarkston, MI


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Kathi Luis

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