Lauren Beauregard – Executive Director
Lauren Beauregard’s journey with CLOVES Syndrome Community began in 2015, sparked by her daughter Kiki’s diagnosis. She has been involved with the community since then, notably contributing on the Family Advisory Council since early 2020 before becoming the organization’s Executive Director in 2024.
Lauren’s prior career in program management has granted her extensive experience in community engagement, team leadership, and project coordination, which she leverages daily in spearheading CLOVES Syndrome Community’s mission to improve the lives of those affected by this rare condition.
Finally, Lauren is the author of Four Leaf Clovers, a children’s book about living with physical differences, created in coordination with CLOVES Syndrome Community. She also contributed to Meet the PROS, a collaborative advocacy publication for children 8-12, funded by Novartis.
Noreen Fairley – Collaborative Research Network Coordinator
Noreen has worked supporting rare disease nonprofits for the last 7 years. Coming to the field from a childhood love of volunteering that evolved into multiple degrees focused on Nonprofit Management and International Administration. Past positions at several small nonprofits have allowed her to wear many hats and learn about all aspects of administration, program management, advocacy, communications, and development.
Noreen has attended and presented at rare disease conferences across the country and abroad. She has experience planning and executing patient and scientific conferences as well as interfacing with the research and pharmaceutical communities.
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