Tell the FDA About Your ILD

Want to tell the FDA about how it is to live with an interstitial lung disease? Now is your chance. I received this email from the wonderful folks at the Coalition for Pulmonary Fibrosis. Simple enough. Tell your story.

The Coalition for Pulmonary Fibrosis (CPF) is proud to announce a special partnership with Genetic Alliance that will bring the experiences and needs of Pulmonary Fibrosis (PF) patients directly to the Food and Drug Administration (FDA).   Patients and caregivers are encouraged to take advantage of this unprecedented opportunity by responding to the PF questionnaire now available as a link on the CPF website athttp://www.coalitionforpf.org/peer-portal/ This important new program is a result of the FDA’s commitment to gaining patient perspective on 20 disease areas. The  search for treatments and a cure depend on understanding what types of risks and benefits are meaningful to patients as drugs are researched and reviewed.  Your voice can be critical to finding the answers we need.  Please take a few minutes to complete the survey – those few minutes may prove of immeasurable value to the entire community. In an effort to capture as much information as possible, families and caregivers who have lost someone to the disease are also encouraged to participate.  This inclusive approach will vastly increase the potential for information sharing in this important program. This is a time sensitive effort as Pulmonary Fibrosis is one of three diseases that will be the focus of FDA attention in 2014-2015 in drug development public meetings that will be held later this year. Genetic Alliance and the Pharmaceutical Research and Manufacturers of America (PhRMA) developed the initiative to explore the use of a technology-enabled, crowd-sourcing approach to patient engagement as a complement to ongoing patient-focused drug development efforts under the Prescription Drug User Fee Act (PDUFA V).  The CPF is delighted to have been selected by Genetic Alliance to partner in this vital gathering of information about patient experiences. Sincerely,  Mishka Michon, CEO, Coalition for Pulmonary Fibrosis Share Your Experiences!  Click Here http://www.coalitionforpf.org/peer-portal/       Coalition for Pulmonary Fibrosis 10866 W. Washington Blvd. #343 Culver City, CA 90232 (888) 222-8541 info@coalitionforpf.org