Be Involved in a Meeting with FDA on CF!

On October 29th, individuals with cystic fibrosis and their families will have a unique and pivotal opportunity to share their experiences with representatives of the FDA during a live-streamed interactive meeting.

CFRI is very honored to host an Externally-Led Patient-Focused Drug Development Meeting on Cystic Fibrosis with the FDA on Monday, October 29th. This is an amazing and singular opportunity to share the patient experience with FDA representatives. They want and need to know the impacts and burden of the disease, your hopes for new therapies, and what you are willing to go through to find these new drugs.

PLEASE register to participate in this free live-streamed meeting! We need your input and participation You will have the opportunity to participate in live polling, and to email and call in to share your experiences. Those who do not have CF/a family member with CF should also feel free to join us.

You can register and log in for any or all of the day’s presentations and discussions. The day begins at 9:45 am. Please note: all times listed are East Coast time, as the meeting will be held at the College Park Marriott Hotel and Conference Center in Hyattsville, Maryland.

Here is the link:  http://cfri.org/advocacy/advocacy-events/

Speakers/Panelists
Jen Caruso
Lise-Courtney D’Amico
Boomer Esiason
Gunnar Esiason
Joseph Klausing, JD
Emily Kramer-Golinkoff
Robert Lim, MD
Jane Mitchell
Anna Payne
Kat Quinn Porco, MS
Tejashri Purohit-Sheth, MD
Arek Puzia, CPA, MBA
Emily Schaller
Isa Stenzel Byrnes, LCSW, MPH
Ahmet Uluer, DO, MPH
James Valentine, JD, MHS

Thank you for having an impact upon those who are assessing the safety and efficacy of new CF therapies, and making recommendations for their movement to market. 

Your voices matter!

You are invited! CF Transplant MiniCon

Another virtual event for our adult CF community!

About CF MiniCon: Transplant
This virtual event will explore all stages of the transplant process and allow those who are considering a transplant, preparing for transplant, or post-transplant to connect with others, learn more about the process, and share their experiences.

The CF MiniCon will feature a keynote presentation followed by storytelling panel discussions and small group video breakouts.

Check out the agenda at https://cff.swoogo.com/minicontx/agenda and register now, https://cff.swoogo.com/minicontx.

This event is open to adults with CF, their family members, and caregivers age 18 or older.

WEDNESDAY, AUGUST 15
6:30 – 10 p.m. ET | 5:30 – 9 p.m. CT | 4:30 – 8 p.m. MT | 3:30 – 7 p.m. PT