Don’t miss the virtual celebration of Rare Disease Day at NIH on Monday, March 1, from 10:30 am to 5:30 pm EST. Each year, the NIH’s National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center sponsor the event as part of the global Rare Disease Day observance. Goals include raising awareness about rare diseases, the people they affect, and NIH research collaborations underway to address scientific challenges and advance new treatments.
RDCRN will host a virtual exhibit space and meeting room during the event.
In addition, several RDCRN participants will speak at the virtual event:
- At 12:30 pm EST, Marc E. Rothenberg, MD, PhD, and Thomas W. Ferkol, MD, will be featured during the session "Rare Diseases Clinical Research Network (RDCRN): Research Survey on Impacts of COVID-19." Rothenberg, of Cincinnati Children’s Hospital Medical Center, is principal investigator of the RDCRN’s Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR). Ferkol, of Washington University School of Medicine in St. Louis, is co-principal investigator with the RDCRN’s Genetic Disorders of Mucociliary Clearance Consortium (GDMCC). Learn more about the survey.
- Kristen Wheeden will be moderating a panel at 12:45 pm titled “How Care and Research Have Changed During COVID-19.” Wheeden is co-chair of the RDCRN Coalition of Patient Advocacy Groups (CPAG) Steering Committee and executive director of the American Porphyria Foundation. The chair of the RDCRN CPAG Steering Committee, Tracy Hart, will also appear on the panel. Hart is CEO of the Osteogenesis Imperfecta Foundation. Other panelists will be representing the Alpha-1 Foundation and the National Organization for Rare Disorders (NORD).
Rare Disease Day at NIH is free and open to the public, including patients, patient advocates, health care providers, researchers, trainees, students, industry representatives, and government employees. Register in advance at this link. Materials for social media sharing and more are available now from NORD and EURODIS.