Savara Pharmaceuticals raises $8.6 million for new CF clinical trial

Savara Pharmaceuticals raises $8.6 million for new CF clinical trial of AeroVanc, the first inhaled antibiotic (vancomycin) for the treatment of staph infections in CF. AeroVanc is a dry powder and has the potential to be more effective than intravenous with less side effects. Read the link for more information…

http://www.statesman.com/blogs/content/shared-gen/blogs/austin/startups/entries/2012/06/13/austinbased_savara_pharmaceuti.html

CF Community Video Short series, “Adapting to CF Normal”

Video Short #4 – CF: Adapting to CF Normal
Now online! Feeling normal while living with CF can sometimes seem hard, but seeing how others manage CF and live their lives may help inspire you. Check out these people with CF as they share how they define their normal with CF at http://bit.ly/IkJzI7 : Continue reading CF Community Video Short series, “Adapting to CF Normal”

CFTR2 – a fabulous new resource on gene mutations is now available for public use!

Collaborators from several institutions around the world and the US Cystic Fibrosis Foundation are excited to announce that a new resource – CFTR2 – is now available for public use!  This is the result of an international research collaboration to provide information about specific Continue reading CFTR2 – a fabulous new resource on gene mutations is now available for public use!

CF Wind Sprint 25: Club Cystic Fibrosis on its website

The Boomer Esiason Foundation has posted CF Wind Sprint 25: Club Cystic Fibrosis on its website.

Club CF is a valuable online resource featuring stories about adults around the country who are living, breathing and succeeding with cystic fibrosis.

Despite the popularity of social media, there are few online venues where people with CF actually Continue reading CF Wind Sprint 25: Club Cystic Fibrosis on its website

U.S.A.C.F.A. to Observe Rare Disease Day

(United States) U.S.A.C.F.A. will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29.  The purpose is to focus attention on the needs of patients and families affected by rare diseases.

“This is a global observance,” said Peter L. Saltonstall, president and CEO of NORD.  “Individuals and organizations around the world will all be sharing stories of how rare diseases affect their lives.” Continue reading U.S.A.C.F.A. to Observe Rare Disease Day