Tell the FDA

Another reminder from the Coalition for Pulmonary Fibrosis to share your experience with the FDA. Check it out:

Have you ever thought your experience with Pulmonary Fibrosis (PF) could help researchers and efforts to find treatments?  You're right. Your insight is important in making progress in the disease efforts and this is your chance to help change things! Please go to this link now to answer an important survey and share your experience as a patient, caregiver, or family member of a patient past or present: http://www.coalitionforpf.org/peer-portal/ Sharing information from your perspective will help the Coalition for Pulmonary Fibrosis (CPF) inform the Food and Drug Administration (FDA) on what's reallyimportant to patients and families as they review drugs coming to market for PF (and they are reviewing two drugs now: InterMune's pirfenidone and Boehringer Ingelheim's nintedanib).   Hurry!  The Survey Results will be Provided to the FDA prior to the Workshop in Sept. 26 but we need your input NOW! We'll compile your input into a report to the FDA so that they are well-informed about what patients want and need.  We'll provide the report to FDA prior to the FDA Idiopathic Pulmonary Fibrosis Workshop to be held on September 26th. So, it's important to get your perspective now! Please answer the survey: http://www.coalitionforpf.org/peer-portal/ About the FDA IPF Workshop This important FDA workshop (part of the FDA's Patient Focused Drug Development 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.  By the way, if you want to participate in the workshop either in person in Silver Spring, MD at the FDA offices or online, visit: http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm395774.htm.  (Space is limited for both the in-person meeting and the online webcast, so register as soon as possible at the lnk above). Background on the Survey The CPF announced this special partnership with Genetic Alliance that will bring the experiences and needs of PF patients directly to the 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 at http://www.coalitionforpf.org/peer-portal/ About the Technology 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