Earlier this week, we gathered with over 800 rare disease advocates at the 2018 Rare Diseases & Orphan Products Breakthrough Summit hosted in Washington, D.C. by the National Organization for Rare Diseases (NORD), a nonprofit dedicated to individuals with rare diseases and the organizations that serve them. Mesothelioma is among the nearly 7,000 diseases considered rare in the U.S., and the Meso Foundation is one of NORD’s 280 patient organization members.
The summit brought together leaders from the Food and Drug Administration (FDA), the National Institutes of Health (NIH), patient groups, payers, and research institutions to explore the new and innovative ways in which patients and caregivers are helping drive progress for the rare disease community.
One way is patient advocacy. Leaders from the FDA, NIH, pharmaceutical companies, and biotech firms want the input of rare disease patients and caregivers as they work on developing treatments and cures. These patient advocates play an integral role in helping advance the drug development process, the design and outcomes of clinical trials, and, most importantly, the understanding and awareness of rare diseases that affect the lives of over 30 million Americans. This partnership allows researchers to better understand a specific rare disease patient community, its terminology and lingo, and ultimately build trust with patients and caregivers.
Whether you are a mesothelioma warrior or caregiver, patient advocacy has never been more vital. The Meso Foundation and the entire community needs each of you to stand up and be a voice. This is how we will get things done. Learn more about the Foundation’s advocacy efforts and how you can get involved here.
We appreciate NORD for selecting the Meso Foundation as a scholarship recipient, which allowed us to attend this year’s summit.
“We don’t have the experience in rare diseases – we can’t pretend to have it. We need to rely on experts and rely on patients to understand how the disease impacts you and your families. We need that input from you.” Current Topics from the @US_FDA #NORDSummit
— NORD (@RareDiseases) October 16, 2018
