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.
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
Caring Voice Coalition
Caring Voice Coalition is dedicated to improving the lives of patients with chronic illnesses. Their organization continues to accomplish its mission by offering outreach services that provide financial, emotional and educational support.
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.
Rare disease united foundation
The Rare Disease United Foundation is the nation’s leading rare disease advocacy organization. We are a non-disease speciﬁc, community-based organization, working at a state-level on legislation that has a direct impact on people living with a rare disease, providing support locally, and establishing relationships at local hospitals and medical schools. RDUF has also created groundbreaking programs like our Rare Care Collaborative Project which is a lecture series by rare disease patients and caregivers to 1st and 2nd year medical students and our Beyond the Diagnosis Art Exhibit which will travel around the country to medical schools and hospitals. Living rare has led RDUF to create programs that directly address our unmet needs. Our mission is to create real change for the rare disease community. Change for Rare is Here!
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.
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 news publication dedicated to offering comprehensive daily news coverage of the science, medicine, and human interest stories surrounding the effects of the disease, as well as the effort underway to treat and eventually cure it.
The editors at Pulmonary Hypertension News are committed to sourcing and covering PH stories on a daily basis, creating the first and only 24-hour news cycle for the disease.
CTEPH, or chronic thromboembolic pulmonary hypertension, is a rare type of pulmonary hypertension (PH). The most common symptoms of CTEPH are similar to those of PH, including shortness of breath with exercise, fatigue, or weakness. While it can be life-threatening, it’s the only type of PH that can be cured in some people with a type of surgery called PTE, or pulmonary thromboendarterectomy.
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.
OUR PH LIBRARY
A library of high quality resources developed by patient groups for anyone who has been diagnosed with Pulmonary Arterial Hypertension (PAH) as well as their families and carers. It also aims to provide an index of useful materials for patient organizations from around the world.