Rare Disease Day is celebrated on the last day of February each year. The day is celebrated in order to bring attention to the general public and decision makers about rare diseases and how they affect patients’ lives. They day was first introduced by Eurordis and its Council of National Alliances in 2008.
The theme this year is “With Research, Possibilities are Limitless.” Events are planned by rare disease organizations around the world. (http://www.rarediseaseday.org/events/world)
The LRG was recently featured on the NORD (National Organization for Rare Disorders) Facebook page in their Countdown to Rare Disease Day.
The Life Raft Group since its inception has been dedicated to research. From the early days when our unique Patient Registry was created, through the development of our GIST Collaborative Tissue Bank, to the establishment of our collaborative research team, we have always been about patient-powered science. This has led to innovative research collaborations like the one with Columbia University Medical Center, NewYork Presbyterian mentioned in our lead article.
We have been celebrating the countdown to Rare Disease Day by posting on social media on “Research Fridays,” the unique ways in which we engage in research initiatives that continue to impact patients’ lives.
One of the suggested activities for Rare Disease Day is to raise and join hands to show solidarity with rare disease patients around the world. We invite you to take photos, whether with your family, friends, coworkers or at an event, where you raise or join hands and either send them to us or post them on the Life Raft Group Facebook page.
We will be joining hands on February 28, and posting our photo to show our support for this important cause. Why not join us?
