PFF news and notes

News and information from the Pulmonary Fibrosis Foundation.

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By ladydidi · New reply June 11, 2013
6 replies
Does anyone wear a mask when you feel you are in a situation where they may be irritants to your lungs. I like to grill but the smoke really bothers me. I also noticed that when I was at the Hair Salon ...

Brand New Oximeter Technology

By SteveCostaRica · New reply June 9, 2013
8 replies
There is a new patient oriented oximeter -it connects to your iPhone -records continuous data -makes records your Doc can see in an email Here is a video clip: http://ispo2.com/default.aspx Here is how ...

New Support Group in Cincinnati

By PFFCourtney · Posted June 7, 2013
0 replies
New ILD Patient Support Group at University of Cincinnati presented by the UCMC Interstitial Lung Disease Clinic First meeting: Saturday June 8th at 12pm to 2pm Topic: "The Use of Oxygen" presented by ...

The PFF Communities on Inspire Celebrate One Year Anniversary

By PFFCourtney · New reply June 5, 2013
11 replies
Last year on May 15, 2012, the Pulmonary Fibrosis Foundation launched our online support communities on Inspire.com. Since then our membership has grown to almost 2,000 people on both our Patient and ...

Another PF site

By wood911 · New reply June 2, 2013
7 replies
Here's another website for those who haven't found it, yet. There may be different information www.ipftoday. com Also, here's a feel-good video about an old topic http://www.today.com/video/today/5127003 ...

FDA Patient Network

By PFadvocate · New reply May 24, 2013
3 replies
FDA launches new Patient Network website to educate and get input from patients and advocates The website explains FDA regulatory and policy issues, the medical product development process, and mechanisms ...

be heard link

By dawni · Posted May 14, 2013
0 replies
Check out this link.You can be heard using 500 words http://pulmccm.org/be-heard-by-your-coll eagues/?utm_source=Email%20Updates%20fro m%20PulmCCM&utm_campaign=1a2f861a99-Cook ies_2_25_2013&utm_medium=email&utm_term ...

FDA Patient Network

By PFFCourtney · New reply May 9, 2013
1 reply
FDA launches new Patient Network website to educate and get input from patients and advocates The website explains FDA regulatory and policy issues, the medical product development process, and mechanisms ...

Summit 2013 Registration is now open!

By PFFCourtney · New reply May 8, 2013
9 replies
Registration is now open for the PFF Summit 2013: From Bench to Bedside in La Jolla, California December 5-7th. The goal of the PFF Summit 2013 is to foster a collaborative environment to improve the ...

Sen. Rand Paul on Senate Floor 4/25/13

By Scaudell · New reply April 29, 2013
2 replies
God bless Sen. Rand Paul for this speech on the Senate floor regarding orphan drugs. http://youtu.be/XZagVEr8CTQ ...

Cause of IPF

By tiffanygl · New reply April 27, 2013
22 replies
Hello everyone. I belong to an IPF support group at UCLA and yesterday one of the members asked what caused IPF. The nurse who chairs the group is extremely well versed in the disease provided the aswer ...

Sub Clinical ILD

By Blitz · New reply April 15, 2013
4 replies
Just a note and food for thought... There is a lot of research that suggests that ILD's exist sub clinically long before they cause overt symptom and/or show up on radiologic studies etc ...

Has anyone heard from Chevelle

By Retiredlibrarian · New reply April 15, 2013
1 reply
Has anyone heard from Chevelle? It has been hotel awhile since I have seen a posting from him ...

Great News from the FDA

By PFFCourtney · New reply April 14, 2013
14 replies
IPF will be included in the 20 diseases the FDA will include in their "Patient Focused Drug Development" initiative. Last October, the PFF's CEO and Chairman of the Board Dr. Daniel Rose and Dolly Kervitsky ...

New Stem Cell Research

By PFFCourtney · New reply March 26, 2013
7 replies
Dr. Brigitte Gomperts from UCLA received $934,515 from the California Institute of Regenerative Medicine (CIRM) for her grant proposal: “Using induced pluripotent stem cells (iPSCs) to model idiopathic ...

New procedure for lung transplant patients

By drummer5543 · New reply March 25, 2013
7 replies
New procedure gives hope to lung transplant patients A revolutionary surgery at UCLA Medical Center may change the way the medical community performs transplants. NBC’s Dr. Nancy Snyderman reports on ...

Help Raise Awareness of PF for Lifetime TV

By PFFCourtney · New reply March 25, 2013
9 replies
The Pulmonary Fibrosis Foundation has been asked to help locate patients and their caregivers interested in participating in a television feature. The program called “Balancing Act” airs every morning ...

Lung transplant

By dayvet · New reply March 18, 2013
4 replies
For those of you who were wondering about lung transplants and the age of acceptance, please check out this story at http://news.yahoo.com/illinois-man-73-ol dest-lung-143950195.html ...

Yesterday

By Romero · New reply March 13, 2013
7 replies
Yesterday was a terrible day for me, I had cry baby blues, just felt horrible , but I know I will have days like that, I take it as the Lord saying call upon my name, He just wants me to get closer to ...

News from Washington D.C.

By PFFCourtney · New reply March 6, 2013
9 replies
As part of a Rare Disease Day two-day celebration, NORD is hosting a Rare Disease Day conference at the National Institutes of Health (NIH) in Washington, D.C. Our Vice President of Patient Services and ...

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