Voice of the Cystic Fibrosis Patient Report

A Summary Report of the Externally-Led Patient-Focused Drug Development Meeting on Cystic Fibrosis

CFRI is honored to share Voice of the Cystic Fibrosis Patient, a summary report of the experiences, preferences, hopes, and fears shared by those attending CFRI’s Externally-Led Patient-Focused Drug Development Meeting on Cystic Fibrosis held October 29, 2018.

On this momentous day, the diverse and complex patient experience with cystic fibrosis (CF) was shared with representatives of the Food & Drug Administration (FDA), healthcare providers, researchers, biotechnology company representatives, and fellow members of the CF community, so as to expand understanding of disease impacts, the critical need for new therapies, and our community’s willingness to actively participate in clinical trials and to assume risks so as to advance drug development.

To read the report, click here.

The meeting is available for viewing here: http://www.youtube.com/watch?v=9EBhbzyvP1Q

Sponsors:

Platinum Sponsor:

Gold Sponsor:

Silver Sponsor: Proteostasis Therapeutics, Genentech, Ionis Pharmaceuticals, Synspira

Bronze Sponsors: Santhera Pharmaceuticals, Translate Bio, Eloxx Pharmaceuticals, Mylan Pharmaceuticals (through an independent medical education grant), and AzurRx BioPharma.