Written by Valaree DonFrancesco on October 29, 2020
NORD invites you to a virtual externally-led Patient-Focused Drug Development (EL-PFDD) meeting on Krabbe disease, taking place Thursday, October 29, 2020.
If you are a patient, family member or caregiver affected by Krabbe disease, this is an important opportunity to… Read More
Written by Laura Mullen on September 23, 2020
There are over 7,000 rare diseases, approximately 90% do not have FDA-approved treatments, and the… Read More
Written by Laura Mullen on September 21, 2020
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
Written by Laura Mullen on July 23, 2020
Washington, DC, July 23, 2020—In response to the unprecedented challenges rare disease nonprofit organizations are currently facing, the National Organization for Rare Disorders (NORD®) today announced nineteen seed grant recipients of its COVID-19 Rapid Response Leadership Series program. The awards Read More
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