I received the below from the head of our ILD Support Group:
Hi, Everyone –
I just received an exciting email from Dr. Jeff Swigris at National Jewish in Denver. It’s about a new program called the Participation Program for Pulmonary Fibrosis, or P3F. Here’s its mission statement:
“The Patient Participation Program for Pulmonary Fibrosis (P₃F) is an innovative new program whose over-arching purpose is to identify and motivate patients to participate in the process of advancing knowledge of pulmonary fibrosis (PF). The mission of P₃F is to promote understanding of what it’s like to live with PF, to find ways to make life better for patients who suffer from this disease and ultimately, to help discover its cure.”
The program website is: http://pulmonaryfibrosisresearch.org/
I’d like to point out three things on this website, all of which you will find in the blue bar across the top of the home page:
1. The P3F registry – An opportunity for you to sign up for ”a confidential database of individuals diagnosed with PF (and/or their primary supporters/caregivers) who wish to be contacted about participating in research projects as they become available”
2. Current Studies – There is a new and exciting study called Determining the effects of supplemental oxygen on outcomes meaningful to patients with pulmonary fibrosis (PF). If you currently wear oxygen at all - any time of day or night – PLEASE sign up for this easy study. We all very much need to understand more about the experience of using supplemental oxygen.
3. Dr. Swigris’ blog – Two recent posts are VERY timely, since our November 12 support group meeting will be a walk to get us all thinking about and experiencing the important role of exercise in interstitial lung disease:
I Have Pulmonary Fibrosis…You Mean I Should Exercise?
What’s Going On Inside When I Exercise?
There’s a terrific post on shortness of breath, too.
So click on http://pulmonaryfibrosisresearch.org/ to find out all about the new and exciting Participation Program for Pulmonary Fibrosis, or P3F!