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Shelby Paulson
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Contact Shelby

Shelby received dual bachelor’s degrees in Biology and Psychology from the University of Florida. After completing her undergraduate education, she worked as a genetic counseling assistant at a pediatric hospital in Orlando, Florida. This experience ignited a deep passion for genetics, education, and rare disease advocacy, leading her to pursue a master’s degree in genetic counseling, which she is currently completing at Long Island University in New York.
 

Shelby has a personal interest in hypermobile Ehlers-Danlos syndrome (hEDS) and other connective tissue disorders. Shelby’s dedication to hEDS is driven by their younger sister’s diagnosis, which has fueled her commitment to patient advocacy. She is currently working on her thesis project, which focuses on the patient experience in the hEDS community, aiming to bring greater awareness and understanding to this condition within the medical field.

 

Committed to advancing the field of genetic counseling and supporting individuals with rare diseases, Shelby strives to be a passionate advocate for genetics education and the integration of patient-centered care.

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The Rare Advocacy Movement (RAM) is the first sustainable rare disease community-based network designed to unite and empower people with lived rare disease experiences.  RAM is dedicated to protecting the fair market value of the community's perspectives, insights and experiences (PIE). All RAM members vow to always act in the best interest of the global rare disease community by abiding by the Code of Conduct for Membership. Violations of the Code of Conduct for Membership shall result in resignation from the RAM membership via majority vote. For those not yet ready for RAM Membership, partnerships and trusted stakeholder options are available through Rare360.

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