Written by Laura Mullen on July 16, 2020
Today, the Chan Zuckerberg Initiative (CZI) announced $1.3 million in funding to support the global rare disease community through two distinct grants to NORD and EURORDIS-Rare Diseases Europe. These grants will support organizational capacity building programs and awareness campaigns for Rare Disease Day, respectively, and are part of CZI’s… Read More
Written by Laura Mullen on March 31, 2020
During times of crisis we are once again reminded of how honored we are to fight for and alongside the rare disease community. Our rare herd is composed of remarkable individuals who truly embody our motto: Alone we are rare. Together we are strong.
We hope you… Read More
Written by Laura Mullen on March 11, 2020
If you or someone you love is diagnosed with a rare disease, you might find yourself on a very quick learning curve about the disease (or about the lack of information on the disease, or trying to even get to an accurate diagnosis!). The number one priority for… Read More