Beth Nguyen on Clubhouse

Bio

I am a registered nurse with living with a rare disease rarely recognized in medicine. My complex journey as a nursing leader, rare changemaker, and rare patient inspired me to pave a path forward for others with rare diseases in healthcare. I wear three distinct leadership hats in the rare sector and it is an honor to serve my rare community through each role.

I am the Founder of a large 501c3 nonprofit with a mission to increase understanding and access to education about Syringomyelia & Chiari and their complexities in medicine; Spearheaded the first multidisciplinary model of care tool for SM; Received a prestigious 2017 NORD Rare Impact Award; Authored "Beyond Syringomyelia" to share a powerful testimony; and Led the passage of over 20 proclamations recognizing the significance of rare diseases in Georgia.

I serve as the Volunteer Georgia NORD Ambassador to lead annual Rare Disease Day events in Georgia to promote positive changes at the state level through the Rare Action Network; Lead advocacy efforts to pass legislation to establish a Rare Disease Advisory Council in Georgia; and Established the 2021 Rare Georgia Coalition with NORD.

It is truly an honor to serve as a Founding Partner of Rare Strides® to empower patients and medical teams with innovative tools to successfully fight rare diseases. Rare Strides® team is committed to the delivery of exceptional clinical care for rare patients in every medical setting. We are passionate about giving back to fund patient programs and continued innovation for children and adults with rare diseases who deserve excellence in healthcare.

In my "spare time" I am a compassionate keynote speaker in the rare sector; ready to deliver a powerful testimony about my personal journey with a rare disease as a nurse, patient, and leader. My passion is to inspire and empower medical teams, 501c3 nonprofits, researchers, academia, and patients to innovate together using a community-centric comprehensive approach to healthcare.