CysticLife
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Cystic Fibrosis
Time is Running Out for Irish Family Facing Deportation Because of Cystic Fibrosis
About a month ago, we reported on a story about an Irish family that is facing deportation from Australia. The family includes Anthony and Christine
With Time Running Out, an Artist With Cystic Fibrosis Reflects on Her Art and Experiences as a Patient
According to a story from BBC, 35 year old Kimberly Chard knows that she probably doesn’t have much longer to live. Kimberly was born with
A Cystic Fibrosis Patient’s Take on Pharma’s Astronomical Drug Prices
The Problem Orkambi is a drug for cystic fibrosis (CF) created by Vertex. It is effective for approximately 40% of all CF patients. It was
Program Established by the NIH to Help Rare Disease Advocacy Groups Start Patient Registries
The Beginnings Anne Pariser worked for 16 years at the FDA. For part of that time, she was a team leader for the Center for
Cystic Fibrosis Patient’s Inspiring Speech to New Doctors Stresses The Importance of Patients as Partners
Gunnar Esiason, a 28-year-old cystic fibrosis (CF) patient, just delivered an inspirational pre-commencement speech to the 2019 St. Louis University School of Medicine graduating class.
The Cure Rare Disease Foundation is Trying to Change the “One Size Fits All” Approach Toward Treatment
The Cure Rare Disease Foundation The Cure Rare Disease Foundation‘s mission is to increase collaborative efforts between researchers in order to accelerate the development of customized
