Twelve patient/consumer groups urge senate to reject the bill.
Site Search
The Cystic Fibrosis Foundation joined 28 patient and consumer organizations in responding to new Centers for Medicare and Medicaid Services (CMS) guidance issued by the administration that undermines patient protections granted by the Affordable Care Act.
Responding to the Trump administration's recent decision to freeze risk adjustment payments, the Cystic Fibrosis Foundation joined 13 other nonpartisan patient groups to voice disappointment in the latest administrative efforts to undermine adequate and affordable health care for people with pre-existing conditions.
Responding to the U.S. Department of Health and Human Services final rule on short-term, limited-duration insurance plans, the Cystic Fibrosis Foundation joined 26 other nonpartisan patient and consumer groups to voice concern that these plans will split the market and jeopardize access to affordable, adequate health care for people living with pre-existing conditions.
Update: On February 3, 2017, the Cystic Fibrosis Foundation divested its remaining ownership stake in CF Services Inc., a specialty pharmacy. The pharmacy is now fully owned by Walgreens.
Today, the Cystic Fibrosis Foundation announced that it awarded funding to enGene Inc. to develop a customized vehicle to deliver genetic-based therapies, such as gene therapy and gene editing, into the lung cells of people with cystic fibrosis (CF). Delivering genetic-based therapies to the lungs is a key hurdle to developing effective treatments for all people with CF, including individuals with two nonsense and rare mutations.
Legislation Includes Measures to Increase Patient and Expert Participation in FDA Review of Rare Disease Drugs
The Cystic Fibrosis Foundation has awarded up to $3 million to Kinnear Pharmaceuticals to conduct preclinical testing of a broad-spectrum anti-infective that has the potential to treat multi-drug resistant Pseudomonas and other infections in people with cystic fibrosis.