News

Rare Disease Day Panel Opens Window to Patient Experience

Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…

Applications Now Open for $10,000 2022 CFF Impact Grants

The Cystic Fibrosis Foundation’s 2022 CFF Impact Grant program is now accepting applications from individuals or nonprofit groups seeking funding for projects that support cystic fibrosis patients or their families in their everyday lives. Those wishing to develop such efforts — particularly virtual support programs — also may…

Canadian Researchers to Study New Cell Types in CF

The Canadian Institutes of Health Research (CIHR) has awarded CA$810,000 (about $637,000) over five years to researchers at the University of Saskatchewan (USask) to support their research exploring the role of two cell types in the lungs of patients with cystic fibrosis (CF). A better understanding…

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…