Rare Disease Advocates Unite for Research and Support at Rare Disease Day Event

Posted: April 10, 2024

Rare disease patients, their families, researchers, and clinicians all gathered at The University of New Mexico Rare Disease Day on February 29 to advocate for advances in care, research, and policy for those affected by rare diseases.

Organized by Research Professor in the Department of Chemistry William Garver, and Emeritus Professor of Medicine Tudor Oprea, as well as the President and Co-Founder of Lipodystrophy United, Andra Stratton, the event served as a strategy meeting where advocates planned and communicated their actions for establishing a New Mexico National Organization for Rare Disorders (NORD) chapter.

NORD is a nonprofit organization that was established in 1983 to support families and individuals impacted by rare diseases through advocacy, education, research, and patient-centered programs and awareness campaigns.

In addition to the organizers, patients and advocates like Stratton, Marie Abrego, Candy Romero, John Wakeland, James Baca, and Vivian Reese shared their stories. By sharing their stories, the group took the first step on Rare Disease Day to begin building supportive communities. Stratton shared the importance of bringing scientists to the event because they “make things happen.”

Research on rare diseases is often limited, but there is a growing body of work dedicated to understanding and treating these conditions. However, there is no clear bridge between the scientific community and the patients this research is meant to benefit. Securing funding is also an ongoing struggle. Moreover, there's the continuous struggle of communicating the lived experiences of rare disease patients to those who might not notice visible symptoms of illness.

As discussions continue and initiatives take shape, the rare disease community remains united in its pursuit of better treatments, increased awareness, and ultimately, a brighter future for all those affected by rare diseases.

Link: Rare Disease Advocates Unite for Research and Support at Rare Disease Day Event