On February 28, 2019 the relapsing polychondritis awareness and support foundation joined the Friends of Patients at NIH and Drs. Marcela Ferrada and Peter Grayson at the National Institutes of Health in Bethesda MD for Rare Disease Day at the NIH. We were thrilled to be representing the relapsing polychondritis community on this global day of awareness at we were especially grateful to have an exhibit table at the NIH on this global day of awareness and action.
The NIH event (a tangible subset of the broader global movement event RDD), was set forth to raise awareness about and address rare disorders, the people they affect, and current research collaborations. It was sponsored by the National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center which feature interactive panel discussions on collective research models for rare diseases, patient registries, rare cancer research initiatives, and no disease/patient left behind.
It is wonderful to spend time with the driving force behind RP research at the National Institute of Arthritis and Musculoskeletal and Skin Diseases, Dr. Marcela Ferrada, during Rare Disease Day at the NIH. An RP patient herself, she was able to spend tie with us at our table and meet with encouraged patients. It’s great to be in her backyard on such an important day for the rare disease community and we appreciate the tour around the incredible facilities in Bethesda, MD.
We also had the pleasure to spend time with Friends of Patients at the NIH and are so grateful for the incredible work they do and the much needed help they provide to our community of RP patients and the many others seeking treatments here. They are the champions of NIH patients, helping to cover essential needs, and providing emotional and financial support to patients receiving groundbreaking and life-saving treatments.
Thank you to everyone who helped support Rare Disease Day 2019. The #ShowYourRare video was well received and continues to be viewed across social media representing RP patients from around the world. (video below)
RPASF was especially grateful to have an exhibit table at the NIH on this global day of awareness and action, and we thoroughly appreciated spending time with Dr. Peter Grayson and Dr. Marcela Ferrada.