Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Jack The organization which does the most advocacy for us is Pulmonary Fibrosis Foundation. Specifically too, Leanne does a tremendous amount of Patient Advocacy. Over 90% of the funds they raise go to help with the disease. Also many of the research programs are funded through the National Institute of Health to which she is speaking. http://www.pulmonaryfibrosis.org/home.htm An organization that helps many in need is http://caringvoice.org/ Another organization for pulmonary fibrosis is the Coalition for Pulmonary Fibrosis. They do not use their funds as judiciously in my opinion although they do provide some excellent education programs. Their relationship with one pharmaceutical who has provided the vast majority of their funding and their promotion of that company's trials and the potential of their drugs also gives at least an appearance of impropriety. http://www.coalitionforpf.org/ The American Lung Association chooses for the most part to ignore Pulmonary Fibrosis. Apparently it isn't a hot enough subject to raise funds and raising funds, paying for fund raising, and then spending the money on direct mail appears to be their major focus. Read their 990 and then decide how you feel on your own. >> I'm not quite sure how to phrase this question, so be patient. In providing oximeters to a few our members made me wonder if there is an organization that supports fibrosis diseases in the sense of raising public awareness, money for research, and perhaps support for those afflicted who do not have the means to get the medical services they need.> There are many groups out there for particular diseases, but I do not know of one for fibrosis. I know about the Pulmonary Fibrosis Foundation now, but prior to becoming a fibrosis patient I had never heard of it or the disease. I respect the work it does, particularly their emphasis on the patient. > What I hope to see is an organization that can raise funds to help those you can't help themselves. > I'm sure some of you can enlighten me on this subject.> Jack> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Jack Also many have found local organizations to help, churches, and even providers with their charities, such as hospitals. Sometimes it does take some work to find help but fortunately its normally there somewhere. > > > > I'm not quite sure how to phrase this question, so be patient. In providing oximeters to a few our members made me wonder if there is an organization that supports fibrosis diseases in the sense of raising public awareness, money for research, and perhaps support for those afflicted who do not have the means to get the medical services they need. > > There are many groups out there for particular diseases, but I do not know of one for fibrosis. I know about the Pulmonary Fibrosis Foundation now, but prior to becoming a fibrosis patient I had never heard of it or the disease. I respect the work it does, particularly their emphasis on the patient. > > What I hope to see is an organization that can raise funds to help those you can't help themselves. > > I'm sure some of you can enlighten me on this subject. > > Jack > > > Quote Link to comment Share on other sites More sharing options...
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