Policy

March 20, 2019

SOURCEWashington (May 26, 2016)- Senators Edward J Markey (D-Mass.) and Chuck Grassley (R-Iowa) today applauded the passage of a bipartisan resolution to designate May 2016 as Cystic Fibrosis Awareness Month. The resolution strives to bring attention to this tragic disease, acknowledges the tremendous investments and...

Cystic Fibrosis at the Presidential State of the Union VIA SCIENCEMAG.ORG

by BEF

CF Community, CF News, Policy, Research, Therapies

March 19, 2019

"Science gets its moment in Obama's 2015 State of the Union" VIA SCIENCEMAG.ORG By David Malakoff Science rarely makes a major appearance in the President’s annual State of the Union address. Tonight’s speech by President Barack Obama maintained that tradition – but he did take a few moments...

With Resurgence in Polymyxin Use, CHMP Revises Label via Medscape.com

by BEF

CF News, Policy, Therapies

March 19, 2019

SOURCE The European Medicines Agency's Committee for Medicinal Products for Human Use (CHMP) has recommended revisions to the product information for antibiotics known as polymyxins (colistin or colistimethate sodium) for the treatment of serious infections that are resistant to standard antibiotics. Polymyxins, first introduced in the 1960s,...

Updates on Sarah Murnaghan and Pediatric Lung Transplant

by BEF

CF News, Policy

March 19, 2019

Video Source: CNN After six months in the hospital and after two double lung transplants, Sarah is finally returning home. Sarah Murnaghan, a ten year old with cystic fibrosis, has been fighting for her life in the hospital for almost two years - in desperate need of...

Boomer: Sarah’s Transplant is a miracle

by BEF

Boomer Esiason Foundation, CF News, Policy

March 19, 2019

Boomer responds to FOX's Sheppard Smith on the news that 10 year old Sarah Murnaghan has received a lung transplant at Children's Hospital of Philadelphia. The Boomer Esiason Foundation sends Sarah and the Murnaghan family our thoughts and prayers. Recently,...

New Infection Prevention and Control Policy from the CF Foundation

by BEF

CF Community, CF News, Policy

March 19, 2019

Because cystic fibrosis puts the airways at risk for lung infection, the Cystic Fibrosis Foundation has an Infection Prevention and Control Policy in place to protect the health of people with CF at all Foundation events, meetings, and any other gathering places. Proven ways to prevent...

The CF Foundation Expresses Concern About Proposed Disability Benefit Changes

by BEF

CF Community, CF News, Policy

March 19, 2019

The Cystic Fibrosis Foundation, on behalf of the CF community, has taken its concerns about a proposed rule that raises difficulty for people with CF to receive disability benefits to the Social Security Administration (SSA). Recently, the SSA released a proposal that would change the way...

Legislation to Expedite Approval of Rare-Disease Drugs Moving Through Congress

by BEF

CF News, Policy

March 19, 2019

Source: Cystic Fibrosis Foundation The U.S. House of Representatives has passed the Expanding and Promoting Expertise in the Review of Rare Treatments Act, better known as the “EXPERRT” Act. Introduced by Reps. Edward Markey (D-MA), Tom Marino (R-PA) and Cliff Stearns (R-FL), the legislation enables expanded consultation...

CF Foundation Kicks Off ‘Make Every Breath Count’ Campaign

by BEF

CF Community, CF News, Policy

March 19, 2019

Volunteers from all over the country will meet with their elected officials in their hometowns this summer as part of Make Every Breath Count, the Cystic Fibrosis Foundation’s annual national advocacy campaign. By participating in Make Every Breath Count, volunteers hope to build support in Congress...

HHS Reduces Insurance Premiums for Pre-Existing Condition Plan

by BEF

CF Community, CF News, Policy

March 19, 2019

The U.S. Department of Health and Human Services (HHS) on May 31 announced new steps to reduce premiums and make it easier for Americans to enroll in the Pre-Existing Condition Insurance Plan. Premiums for the Federally-administered Pre-Existing Condition Insurance Plan (PCIP) will drop as much as...

Policy

Senators Markey and Grassley Pass Bipartisan Resolution Designating May 2016 CF Awareness Month

Cystic Fibrosis at the Presidential State of the Union VIA SCIENCEMAG.ORG

With Resurgence in Polymyxin Use, CHMP Revises Label via Medscape.com

Updates on Sarah Murnaghan and Pediatric Lung Transplant

Boomer: Sarah’s Transplant is a miracle

New Infection Prevention and Control Policy from the CF Foundation

The CF Foundation Expresses Concern About Proposed Disability Benefit Changes

Legislation to Expedite Approval of Rare-Disease Drugs Moving Through Congress

CF Foundation Kicks Off ‘Make Every Breath Count’ Campaign

HHS Reduces Insurance Premiums for Pre-Existing Condition Plan

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