Feature
Celebrating Rare Disease Day and Looking Forward
February 28, 2025
By bridging science and community, the RFK IDDRC is building a future where every discovery brings new possibilities designed to transform and support individuals and families across all walks of life.
At Einstein, the annual Rare Disease Day has become a cornerstone event, uniting patients, researchers, healthcare providers, and advocates to spotlight the challenges and triumphs associated with rare diseases. First celebrated in 2012 and spearheaded by the RFK IDDRC, the event has served as a platform to bridge the gap between the scientific community and the lived experiences of patients. Over the years, it has grown into a dynamic platform featuring lectures, patient panels, research presentations, and networking opportunities. Einstein’s RFK IDDRC has been pivotal in expanding the event’s reach, aligning its mission to advance research and clinical care for rare conditions. Rare Disease Day also empowers early-career researchers to showcase their work and connect with the rare disease community, enriching their scientific perspective and highlighting their contributions.
Beginning in 2025, the RFK IDDRC now collaborates with the New York Center for Rare Disease (NYCRD) to broaden the scope of this event. In its inaugural year, the partnership debuted with the theme of Genetically Driven Disorders of Blood and Immunity (GBIs). The event was held on February 28, 2025 and consisted of a morning scientific session, a patient panel in the afternoon, and concluded with a reception on Main Street with a poster viewing and networking opportunity.
Beginning in 2025, the RFK IDDRC now collaborates with the New York Center for Rare Disease (NYCRD) to broaden the scope of this event. In its inaugural year, the partnership debuted with the theme of Genetically Driven Disorders of Blood and Immunity (GBIs). The event was held on February 28, 2025 and consisted of a morning scientific session, a patient panel in the afternoon, and concluded with a reception on Main Street with a poster viewing and networking opportunity.
