PH RESOURCES
Below are links to a number of global pulmonary hypertension resources.
THE PEDIATRIC PULMONARY HYPERTENSION NETWORK
PPHNet, the Pediatric Pulmonary Hypertension Network, is an association of medical professionals and centers focused on all aspects of PPH. Providers at these centers offer comprehensive clinical services across a wide range of medical disciplines and initiate and participate in research.
CHEST FOUNDATION
The mission of the CHEST Foundation is to champion lung health by supporting clinical research, community service, and patient education.
Learn More:
https://www.chestnet.org/Membership-and-Community/Philanthropy
PATIENT ADVOCATE FOUNDATION CO-PAY RELIEF PROGRAM
PAF Co-Pay Relief (CPR) provides direct financial assistance to qualified patients, assisting them with prescription drug co-payments their insurance requires relative to their diagnosis. CPR call counselors work directly with the patient as well as with the provider of care to obtain necessary medical, insurance and income information to advance the application in an expeditious manner.
THE SCLERODERMA RESEARCH FOUNDATION
The Scleroderma Research Foundation (SRF) was established in 1987 by patient turned activist Sharon Monsky, when research on this potentially life threatening illness was nearly nonexistent. The SRF is America's largest nonprofit investor in scleroderma research. Patients and their loved ones find hope in the fact the SRF is dedicated exclusively to funding medical research that will help them live longer, fuller lives. Thanks in large part to the SRF and its many generous donors, research and awareness is progressing at a faster pace than ever before.
THE SCLERODERMA FOUNDATION
The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. The Scleroderma Foundation offers tools and resources in support of people living with scleroderma and their families
GENETIC AND RARE DISEASE INFORMATION CENTER
The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). The GARD Information Center provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.
(Below is a link to their Pulmonary Arterial Hypertension resource page).
NORD (NATIONAL ORGANIZATION OF RARE DISORDERS)
Every day in America, 30 million people wake up to fight the battle with a rare disease. The vast majority are children. For most, there are no cures and few, if any, proven and effective treatments. NORD provides a unified voice for those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone.
PHA Europe
PHA Europe is the umbrella organization for national associations of patients living with pulmonary hypertension (PH) in Europe. It was founded in Vienna, Austria, in 2003 and is registered as an international non profit organization.
PHA CANADA
The Pulmonary Hypertension Association of Canada (PHA Canada) is a federally registered charity established by patients, caregivers and health care professionals collectively referred to as the Canadian pulmonary hypertension community.
PULMONARY HYPERTENSION NEWS
Pulmonary Hypertension News is a digital platform intended to provide the pulmonary hypertension (PH) community with the most recent news and information on PH, as well as first-hand community perspectives from our patient and caregiver columnists.
PULMONARY HYPERTENSION RN
The mission of PulmonaryHypertensionRN.com is to provide an informative and educational resource for pulmonary hypertension patients, their families, friends and loved ones. The site aims to educate and serve as a springboard for people seeking a better understanding of the disease, its symptoms, treatments and implications for daily life. All information on this site is reviewed and edited by a Medical Doctor and Registered Nurse specializing in pulmonary hypertension.
PULMONARY FIBROSIS M.D.
The mission of PulmonaryFibrosisMD.com is to provide an informative and educational resource for pulmonary fibrosis patients, their families, friends and loved ones. The site aims to educate and serve as a springboard for people seeking a better understanding of the disease, its symptoms, treatments and implications for daily life. All information on this site is reviewed and edited by a Medical Doctor and Registered Nurse specializing in pulmonary fibrosis.
THE NATIONAL BLOOD CLOT ALLIANCE (NBCA)
The National Blood Clot Alliance (NBCA) is a 501(c)(3), non-profit, voluntary health organization dedicated to advancing the prevention, early diagnosis and successful treatment of life-threatening blood clots such as deep vein thrombosis, pulmonary embolism, and clot-provoked stroke.
NBCA works on behalf of people who may be susceptible to blood clots, including, but not limited to, people with clotting disorders, atrial fibrillation, cancer, traumatic injury, and risks related to surgery, lengthy immobility, child birth and birth control.