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Now in its sixth year, the CPF remains committed to providing our members,
and all those fighting IPF, with the tools and resources they need to combat
this devastating disease, while advocating on their behalf for expanded research
efforts to find a cure. With your support, the CPF is making great strides in
raising awareness of pulmonary fibrosis among patients, families, physicians and
a broad spectrum of healthcare professionals impacted by this progressive lung
disorder. The need for IPF education,
awareness, and support services has never been greater. It is only through the
support from corporations, organizations, medical institutions, and individual
supporters that we are able to provide our quality resources and services to the
IPF community. Through your generous support, the CPF will continue to provide
valuable resources to more than 128,000 IPF patients, caregivers and families,
and to the healthcare professionals who treat them.
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- Annually directing more than 90 cents of
every dollar contributed to fund patient services and IPF research, making the
CPF one of the most efficiently operated nonprofit organizations in the
U.S.
- Annually awarding more than $1,000,000 in research grants to leading medical centers to
advance new approaches to understanding and treating IPF; examples include a
$59,000 grant to the David Geffen School of Medicine at UCLA, a $60,000 grant to
the University of Michigan Health System, and $130,000 in grants to the
University of Chicago Interstitial Lung Disease Clinic
- Partnering with the American Thoracic Society (ATS) in a grant matching program
that has awarded two $100,000, 2-year research gifts in IPF, with two additional
$100,000 partnership gifts to be awarded in 2008 - Annually awarding the $15,000 Marvin I Schwarz Research Award - to a U.S. based
researcher - Providing
support, including IPF resources, physician referrals, free educational
materials, patient resources and support, to tens of thousands of patients and
families nationwide
- Establishing more
than 40 IPF support groups nationwide, directly supporting nearly 1,000 IPF
patients and their families on a regular basis
- Establishing a Basic Research Questionnaire for
patients, which serves as one of the largest databases of IPF patient
information in the world
- Forming valuable nonprofit partnerships with the American Thoracic Society, the
National Coalition of Autoimmune Patient Groups, the Mary D. Harris Memorial
Foundation, the Genetic Alliance, and the Anne Harroun Landgraf Foundation, the
Caring Voice Coalition, the Pulmonary Paper, and the Second Wind Lung Transplant
Association
- Partnered with more than 35 of the nations leading IPF treatment and research
centers to improve disease education and awareness, and assist with patient
recruitment for clinical trials
- Advancing our national
advocacy program, campaign ACT, through hosting three annual National IPF
Awareness Weeks, advocating on behalf of our membership, including more than 150
meetings with Members of Congress in Washington, D.C. to raising awareness of
IPF and successfully advocating for the passage of H.R. 178 in 2005, which
passed the House 401-0 recognizing IPF and the need for increased education,
awareness and research
- Publishing
educational pamphlets that are peer-reviewed by our world-class scientific
advisory and authored specifically for IPF patients: Lets Talk About IPF:
Questions and Answers for Patients and Caregivers; Lung Transplant: What Every
Patient with IPF Should Know; and Pulmonary Rehabilitation & Oxygen
Management for the IPF Patient
- Providing free IPF education seminars for thousands of patients and their
families, partnering with centers of excellence such as the University of
California - San Francisco, University of Washington Chest Clinic, the Mount
Sinai School of Medicine, the University of Minnesota Lung Center, the Dorothy
P. & Richard P. Simmons Center for the Study of Interstitial Lung Disease at
the University of Pittsburgh Medical Center, the University of Alabama
Birmingham, the Cleveland Clinic, the University of Miami School of Medicine,
Duke University Medical Center, Inova Fairfax Hospital, the National Heart,
Lung, and Blood Institute, and the David Geffen School of Medicine at UCLA, the
Yale University School of Medicine, the Emory Center for the Study of
Interstitial Lung Disease, The Medical University of South Carolina, Harvard
Medical School, John's Hopkins University School of Medicine, and the University
of Pennsylvania School of Medicine
- Distributing our CPF Resource
Kit free of charge to thousands of newly diagnosed patients and their
families
- Providing a comprehensive Web
site (www.coalitionforpf.org) with information, resources and services for
pulmonary fibrosis patients as well as medical professionals. The CPF site has
become one of the world's leading resources for IPF information; an important
advocacy tool within the site has helped facilitate an estimated 300 letters
from IPF patients to the President and Members of Congress in support of
legislation important to the IPF community in 2006
- Raising awareness of IPF in the physician community
through the CPF's "What If IPF?" national advertising campaign
- Participating in the annual meetings of the American
Thoracic Society and American College of Chest Physicians to help educate
physicians on the IPF community resources through the CPF
- Providing A Physician's Guide to IPF for general
practitioners and pulmonologists highlighting recent advances and patient
management options
- Creating a 'How-to'
guide for establishing and maintaining IPF support groups
- Establishing a Free Fundraising Guide to help
patients and families raise much needed funding for IPF education and research.
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