The Chan Zuckerberg Initiative on July 16 announced $1.3 million in grants to the National Organization for Rare Diseases and EURODIS-Rare Diseases Europe to grow programs and awareness campaigns for Rare Disease Day.
The CZI grants are part of the philanthropy's Rare as One Project, which funds the work patient communities do to accelerate research in the fight against rare diseases. Priscilla Chan, MD, a pediatrician, and her husband Mark Zuckerberg, founder and CEO of Facebook, launched CZI in 2015 with the mission to cure, prevent or manage all diseases by the end of the century.
NORD, a coalition of more than 300 U.S. member organizations, will use $750,000 in funding to support patient advocacy organizations' clinical research, while EURODIS will use $533,571 in funding to support two Rare Disease Day campaigns in 2021 and 2022. The patient-driven alliance, which represents more than 900 rare disease patient organizations in 72 countries, will direct the campaigns toward those affected by rare disease, researchers, policy makers and the general public.
Established in 2008, Rare Disease Day is a global movement on rare diseases led by EURODIS and 60 national alliance patient organization partners working toward equity in social opportunity, healthcare and access to therapies, said Yann Le Cam, CEO of EURODIS-Rare Diseases Europe, according to a July 16 news release.
"We are pleased to count CZI among the funders of Rare Disease Day, the worldwide grassroots awareness campaign for people living with a rare disease and their families. With this grant, we will amplify the patient voice across borders and diseases to accelerate change for people around the world," he said.