PAR Members & Contact Information
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American Sleep Apnea Association PAR Representative: The American Sleep Apnea Association is the only national non-profit patient interest organization that:
For more information on the American Sleep Apnea Association, please click here. |
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PAR Representative ARDS Foundation is dedicated towards to increasing public awareness, education, support and financial assistance to those engaged in medical research. ARDS Foundation was founded in 2000 and volunteers are those who have been personally affected by ARDS. To learn more about ARDS or the ARDS Foundation, please click here. |
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PAR Representative: The Asthma and Allergy Foundation of America (AAFA), a not-for-profit organization founded in 1953, is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy and research. AAFA provides practical information, community based services and support through a national network of chapters and educational support groups. AAFA develops health education, organizes state and national advocacy efforts and funds research to find better treatments and cures. For more than 50 years, AAFA has been a leader in fiscal responsibility and charity management. AAFA is a member of the most respected nonprofit industry groups and subscribes to the highest ethical standards. To learn more about asthma and allergy or the Foundation please click here. |
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PAR Representative: The Children's Interstitial Lung Disease (chILD) Foundation was founded and established as a not-for-profit foundation in Cincinnati, Ohio on May 20, 2004 by five families whose children had been diagnosed under an umbrella lung disease listed only as Interstitial Lung Disease (ILD). In just two years and in collaboration with a working group of Doctors in what is now a chILD Clinical Research Cooperative, several different diagnoses have been established within chILD, to include, NEHI, ABCA3, Surfactant B & C deficiency, and PIG. chILD syndrome has be found to effect children from birth up to 2 years and now is under review in children from 2-18 years of age. The Mission of The Children's Interstitial Lung Disease Foundation is to provided support, education and hope to families affected with a Children's interstitial lung disease and to advocate and raise funds for scientific research. Furthermore, to develop and provide tools and methods to the medical and education communities to help them understand, diagnose, refer, treat and eventually find a cure for chILD. |
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PAR Representative: The COPD Foundation is a 501(c)(3) not-for-profit organization created on June 14, 2004 with offices in Washington, D.C. and Miami, FL. The mission of the COPD Foundation is to develop and support programs which improve the quality of life through research, education, early diagnosis, and enhanced therapy for persons whose lives are impacted by Chronic Obstructive Pulmonary Disease. Currently, there are 16 members in the Board of Directors who volunteer their time and resources to helping advance the Foundation’s mission and purpose. For more information on the COPD Foundation click here. |
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PAR Representative: The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for idiopathic pulmonary fibrosis (IPF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure pulmonary fibrosis; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of IPF issues; and works to improve awareness of IPF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 10,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with pulmonary fibrosis. For more information please visit http://www.coalitionforpf.org/ or call (888) 222-8541. The mission of the CPF is to accelerate research efforts leading to a cure for pulmonary fibrosis, while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. |
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PAR Representative: The mission of the Cystic Fibrosis Foundation, established in 1955, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. The CF Foundation is committed to improving care and quality of life through its strong medical research and care programs. It supports a nationwide network of CF care centers for pediatric and adult care at large academic and medical institutions. In addition to supporting basic research and a national patient registry to identify trends, the CF Foundation stimulates CF drug development by applying cutting-edge research technologies to screen potential CF drug candidates, evaluate them in the laboratory, and test them in pre-clinical studies and in its clinical trials network. A virtual pipeline for CF drug development is now examining many potential therapies for CF. The CF Foundation supports its research and medical programs with the help of more than 300,000 volunteers at 80 chapters and branch offices across the country. It conducts an annual fund-raising walk-a-thon, GREAT STRIDES, at more than 500 walk sites around the country, which raises millions of dollars for CF research and care programs each year. With the support of the CF Foundation, there has been tremendous progress in cystic fibrosis research and care. The median age of survival has improved from early childhood in the 1950s to 36.8 years of age in 2006. Even so, there is much more work to be done for people with CF to reach a normal and healthy life expectancy. To learn more about cystic fibrosis or the Foundation, please click here. |
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PAR Representative The Foundation for Sarcoidosis Research is the nation's leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. Since its establishment in 2000, FSR has funded numerous domestic and international research efforts and worked diligently to provide resources to thousands. To learn more about Sarcoidosis or the foundation click here |
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PAR Representative: The Hermansky-Pudlak Syndrome Network Inc. is a 501c3 organization founded in 1992 for individuals and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorders such as Chediak Higashi Syndrome. Hermansky-Pudlak Syndrome (HPS) is a rare congenital genetic disease, which causes albinism, legal blindness and a bleeding disorder. The disease can progress to include inflammatory bowel disease and in HPS1 and HPS4, pulmonary fibrosis (scarring of the lungs). This lung scarring generally causes death in an individual with HPS by their 30's to 40's. Our mission is to provide support, education and hope to individuals and families affected by Hermansky-Pudlak Syndrome while we promote and fund research and generate resources for healthcare professionals. We are currently recruiting for a Phase III drug trial for a treatment for pulmonary fibrosis. Our programs include a patient registry and database, a newsletter, an annual conference, and a list-serv. We have members from around the world and because of the incidence of HPS in Puerto Rico we have organized the HPS Network Puerto Rico Branch. "Trying to find a cure with every breath!" To learn more about Hermansky Pudlak Syndrome or the HPS Network please click here. |
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PAR Representative: The National Lung Cancer Partnership is a group of leading doctors, researchers, patient advocates, and lung cancer survivors who are working together to improve treatments for lung cancer patients. The Partnership is dedicated to raising public awareness of the disease and generating funding for lung cancer research. |
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PAR Representative: The Lymphangiomatosis & Gorham's Disease Alliance is a 501(c)(3) nonprofit foundation dedicated to patient support, advocacy, and research to find effective treatments and cures for those affected by the rare lymphatic malformations known as lymphangiomatosis and Gorham's disease. The mission of the LGD Alliance is to improve the care of patients with lymphangiomatosis and Gorham's disease by promoting research that will identify effective treatments and ultimately a cure for these diseases. |
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PAR Representative: Founded in 1990, the Pulmonary Hypertension Association's (PHA) mission is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, advocacy and awareness. Through its four research programs, PHA has committed over $9,000,000 to PH research since 2000, leveraging funding through partnerships with the National Heart Lung and Blood Institute, the American Thoracic Society and the American Heart Association. PHA is built upon the idea that anyone whose life is touched by PH has the right to fight back as much or as little as health and interest allow. It is PHA’s function to make that possible. In a disease state with approximately 30,000 diagnosed patients and 6,000 treating physicians, PHA has grown to over 12,000 members and an additional 50,000 friends and supporters. PHA’s support group network is over 225 groups. We also offer a patient-to-patient telephone helpline, online discussion boards that draw over 900 postings per week and various grass roots advocacy and media campaigns. Targeted programs are offered for patients whose PH emerged as secondary to other diseases, families of children with PH, young adult patients, caregivers and other segments of our community. Founded by patients, PHA has historically also had strong medical involvement. PHA offers a robust program for medical professionals with two active medical sections. PH Clinicians and Researchers (www.PHAssociation.org/PHCR) involves over 500 physician members in medical education and other activities. Over 90 face-to-face medical education programs are being offered in 2010, in addition to online CME programming through the new PHA Online University (www.phaonlineuniv.org) PH Resource Network (www.PHAssociation.org/PHResourceNetwork) engages almost 900 nurses and other allied health professionals in a variety of programs and activities, including the biennial PH Resource Network Symposium. PHA’s publications include Advances in Pulmonary Hypertension, the world's first medical journal dedicated to PH, mailed to all cardiologists, pulmonologists and rheumatologists in the U.S. and physicians in 63 other nations (www.phaonlineuniv.org/Journal); The Patients Survival Guide (3rd edition), a 300 page, patient-written and medically reviewed guide to living with PH, now available in English, Spanish, Japanese, Korean and Chinese; and finally, various print and electronic publications, including Pathlight and Persistent Voices newsletters, the Diagnosis of PH CD-ROM, the Cases, Controversies and Conundrums DVD and over a dozen other electronic medical education publications. For more information on PHA or any of these programs, click here. |
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PAR Representative: The Respiratory Health Association has been a leading lung health advocate since 1906. From its crusade against TB in the early 1900’s to today’s groundbreaking programs in women’s lung health, asthma, COPD and lung cancer, RHA has been in the forefront of Chicago’s fight against lung disease. Enlisting the finest educational tools from across the nation, RHA offers tobacco cessation and asthma education programs targeting adults, caregivers and children. A strong local advocacy effort culminated in the passage of smoke-free legislation in Chicago and Illinois, and limitations on power plant emissions. Respiratory Health Association has been a local leader in securing funding for important lung health research projects at Chicago area universities. RHA serves as host to Chicago Thoracic Society, the local presence of American Thoracic Society in metropolitan Chicago. Donations to Respiratory Health Association support a broad cross-section of our research, program and policy efforts. For more information, please visit our website at www.lungchicago.org |
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PAR Representative: The LAM Foundation urgently seeks safe and effective treatments, and ultimately a cure, for lymphangioleiomyomatosis (LAM) through advocacy and the funding of promising research. The LAM Foundation is dedicated to serving the scientific, medical and patient communities by offering information, resources and a worldwide network of hope and support. |
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PAR Representative: The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. It was formed January 1, 1998, by a merger between the West Coast-based United Scleroderma Foundation and the East Coast-based Scleroderma Federation.For more information please visit foundation’s website
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