News

Q&A With RARE-X Disease Data Platform Founder, Nicole Boice

The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…

Rare Disease Day Events Bring Awareness, Equity to Patients

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…

Global Genes Starting Grant Cycle for RARE Meet-Ups

Global Genes is accepting grant applications to fund a series of U.S.-based RARE Meet-Ups for those affected by a rare disease, including cold-agglutinin disease (CAD), scheduled to occur from April to November. Grant applications are being accepted through the Global Genes Grant Portal until Feb. 4. Recipients…

Case Study: Secondary CAD Caused by Rare Cancer in Spleen

A case of secondary cold agglutinin disease (CAD) was triggered by a rare, undetected slow-growing type of immune cell cancer in the spleen. The case study, “Cold agglutinin syndrome secondary to splenic marginal zone lymphoma: a case report,” was published in the journal Hematology, Transfusion…