There are over 7,000 rare diseases, approximately 90% do not have FDA-approved treatments, and the… Read More
Krabbe Community United Research and Engagement Study (KrabbeCURES)
We are pleased to announce the launch of KrabbeCURES, a collaborative effort between KrabbeConnect and the National Organization for Rare Disorders (NORD) to study globoid cell leukodystrophy (Krabbe disease). KrabbeCURES supports research on Krabbe disease and how it progresses over time.
OVERVIEW OF RESEARCH… Read More
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
At this pivotal time, it is our duty as an organization and as global citizens to broadcast our support of people who have been systemically discriminated against, underserved and underrepresented in the United States, many of whom are part of our rare family. NORD has been fighting for the rights… Read More
NORD’s recently released COVID-19 Community Survey Report reveals the far-reaching impact the pandemic is having on rare patients and families. 772 participants responded to the survey conducted by NORD’s research team from April 1 through April 8, 2020. Respondents represent 49 of 50 states and Washington,… Read More
