The countdown is on for Rare Disease Day on February 28. It’s a day to reflect on how to drive change for the more than 300 million people living with rare diseases, along with their families and caregivers.
Take part by visiting the Rare Disease Day website; checking out the #RareDiseaseDay social media toolkit; and learning how to take part in the Global Chain of Lights. When the sun goes down, the lights shine on as rare disease advocates illuminate landmarks, monuments and homes around the world in the signature colors of pink, purple, blue and green.
In past years, CSL, a global biopharma company, has taken part in the Global Chain of Lights by illuminating locations in Philadelphia, Bern, Switzerland, and Marburg, Germany. The company makes medicines for a number of rare conditions such as hemophilia and primary immune deficiency,
EURORDIS founded Rare Disease Day and leads the initiative along with Rare Diseases Europe, and a global steering committee of patient organizations. The National Organization for Rare Disorders (NORD), the official U.S. sponsor, encourages advocates to use Rare Disease Day to raise awareness with decisionmakers. This year, NORD has chosen equity in health care as a focus, aiming to highlight equity in access to diagnoses, access to therapies, and in opportunities to participate fully in family, work and social life.
Building on the success of last year’s campaign, “More Than You Can Imagine,” NORD invites everyone to reflect on what equity means personally, within communities, and across the rare disease experience. The campaign emphasizes inclusivity and accessibility, expanding resources into more languages than ever before.
