Cystic Fibrosis Advocacy with Cystic Fibrosis Research Institute

Cystic Fibrosis Advocacy

MAKE A DIFFERENCE NOW!

Watch & Share: Many Voices ~ One Voice Cystic Fibrosis Advocacy & Awareness

CFRI’s Many Voices ~ One Voice Cystic Fibrosis Advocacy and Awareness video features members of our CF community, shares facts about cystic fibrosis, and seeks to inspire you to join CFRI’s cystic fibrosis advocacy campaign. There are many ways to raise cystic fibrosis awareness. The easiest way is to share the video with your friends, family and colleagues, today!

Cystic Fibrosis Awareness Month: May 2024

CFRI's CF advocates gather on the floor of the California State Senate to declare May as Cystic Fibrosis Awareness Month.

Please join us in May! Stay tuned for more information and exact date!

CFRI’s Sacramento CA Cystic Fibrosis Advocacy Day

On May 7, 2019, CFRI advocates spent the day in California’s Capitol meeting with State Assembly Members and Senators to raise CF awareness and seek support for access to affordable quality care and therapies. Senator Bill Monning sponsored a resolution declaring May as Cystic Fibrosis Awareness Month in the state of California.

Externally-Led Patient-Focused Drug Development Meeting on Cystic Fibrosis

Members of the CF community participate in CFRI's cystic fibrosis advocacy campaigns.

CFRI was honored to host an Externally-Led Patient-Focused Drug Development Meeting on Cystic Fibrosis with the FDA on October 29, 2018. During this interactive meeting of individuals with CF, parents/caregivers, clinicians, and FDA representatives, the patient voice was brought to those involved in the drug development and review process.

Over 360 people participated via live-stream; emails and phone calls from across the nation broadened the discussion.

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.