Chelsea Wong

Chelsea is 23 years old and has lived with lupus since she was 14 years old. She started in the advocacy space a few years ago through writing articles about her lived experience, writing about disability and racism. In her role as Youth Coordinator for RARE Youth Revolution, she has found a passion in supporting

Jessie Birnbaum

Jessie Birnbaum has a Bachelor’s degree in Psychology from Wake Forest University and will be attending the School of Social Work at Boston University in the fall. She started experiencing severe headaches in early 2020 which further intensified into other debilitating symptoms. She was misdiagnosed with Crohn’s Disease and spent three years searching for an

Carter Hemion

Carter Hemion is a young adult rare disease patient advocate and writer. Carter learned they were born with classical Ehlers-Danlos syndrome at 20 years old, which opened the door to understanding and identifying a plethora of comorbidities. Many of their related chronic conditions, like gastroparesis, MCAS, and POTS, went untreated for months or years because

Nicole Wells

Nicole Wells, MA, is a passionate advocate for health justice. At a unique intersection of knowledge gained through extensive lived experience as a patient, graduate work at Harvard Medical School, and advocacy work at EveryLife Foundation for Rare Diseases, Global Liver Institute, and Kentucky Organ Donor Affiliates, she uses her background to inspire change within

Meghan Kofod

Meghan is the Marketing Manager at Baebies, a company that develops innovative diagnostic and newborn screening platforms. She earned her B.S. in Biotechnology from Worcester Polytechnic Institute and M.S. in Genetic Counseling from the University of South Carolina. Throughout her career, she transitioned from laboratory work to genetic counseling, where she discovered her true passion

Carrie Hodgin

Carrie Hodgin is an Emmy-nominated, regional Murrow Award winner, and recipient of two TEGNA Innovation awards. She has more than 17 years of broadcasting TV news experience working at four different television stations. She was a TV Newscast Producer for more than eight years before transitioning to the trending world of digital where she serves

Oie Osterkamp

Oie Osterkamp has a master’s degree in business and likes to say he “has his PhD in life” (you can read his three books to get an idea of what he means by that). He and two friends started an organizational development consulting company in Raleigh that soared to being ranked #7 in the Inc.

Ashley Point

Ashley Point grew up in Marietta, Georgia and graduated from the University of Kentucky in 1999.  After college she moved to Washington, DC to work in national political fundraising.  She continued her work in Texas and North Carolina for over 10 years, before attending the Joan C. Edwards School of Medicine at Marshall University, where

Dr. Brian Eichner

Dr. Brian Eichner is an associate professor of pediatrics at Duke Children’s, where he started as a resident in 2006 and had stayed since. He enjoys caring for a broad variety of patients in the primary care setting and is the outpatient medical director of the Duke Pediatric Complex Care service and the Duke Children’s

Matt Giordano, Director of Patient Services

Matt Giordano is the Director of Patient Services Field Operations, leading a team of field-based patient access liaisons and community education liaisons. Matt as over 17 years of experience launching numerous new therapies in multiple therapeutic classes. Most recently Matt built out a patient access management team at Xeris Pharmaceuticals for the launch of a