Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 Gale, This is what is in HR 1079: Fund the creation of a national PF patient registry, and call on the National Institutes of Health (NIH) to expand and intensify PF research efforts. Mandate the creation of a National PF Action Plan, in conjunction with the NIH and CDC, which would focus on strategies to improve public awareness of PF, and accelerate patient and medical education strategies. The Action Plan would be provided to the Director of the NIH within one year of the PFREA’s passage. Call for establishment of a National PF Advisory Board, which would make recommendations to the NIH and CDC concerning the structure and management of a PF patient registry. The goal of the registry would be to improve understanding of the cause and progression of PF, improve standards of care, accelerate research and find ways for new therapies to be developed sooner. Mandate the establishment of a National Summit on PF, to foster collaboration between Federal Agencies, researchers, patients and advocates to identify new approaches to research and treat PF. The Summit would be held every three years Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tue, January 19, 2010 7:35:17 AMSubject: Re: Activism works..... Will this bill help research of this illness and/or disabiliy From: Erna <vrolijk50 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 19, 2010 4:13:05 AMSubject: Activism works..... Wow, Phil and I did it we got our congressman to sign on to H.R.1079. He is the only one that signed in 2010. I guess a personal request and telling your story sure helps…. This bill would help us so much with getting help for our dread full illness. Phil told the whole story how hard it was to get a diagnosis for me. I know that being involved in a party sure helps especially being Vice Chair of a legislative district… But the e-mails did not help me either it was the personal contact….. I hope my story will help you to talk to your representative. .How many representatives do we need more?? I am willing to go in front of congress and tell my story if need to be…Oh, dang am I excited about this it puts a smile on my face...and I feel dang sick and it gives me hope….Erna 1992 bird fanciers syndrome,CAD & MI 2004 ,ILD 2008 NSIP 2009 Washington State Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.