Resources

Global Patient Resources

Below are links to a number of global pulmonary hypertension and related rare disease resources.

Pediatric Pulmonary Hypertension Network (PPHNet)

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. pphnet.org

Team PHenomenal Hope

Team PHenomenal Hope (Team PH) works to support the pulmonary hypertension community by providing direct patient assistance, peer support, education, community-building opportunities and funding for innovative pulmonary hypertension research. teamphenomenalhope.org

Live Learn Breathe

Live Learn Breathe is a multidimensional educational platform designed to help people living with chronic lung conditions live their best, healthiest lives. The goal of this project is to provide a comprehensive, patient-centered, whole-person approach to education, helping patients understand their condition, their treatment, and how to take charge of their health. livelearnbreathe.org

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. phacanada.ca

PHAEurope & Global

PHAEUROPE & Global 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.

Over the years membership has grown steadily and currently stands at 33 patient associations from 27 countries. phaeurope.org

Bel Air Center (Virtual PH Conference Center)

A global digital platform and virtual conference center dedicated to Pulmonary Hypertension (PH), offering presentations, patient artwork galleries, and educational resources. belaircenter.info

PHA UK

Pulmonary Hypertension Association UK (PHA UK) provides support, information and advocacy for people living with pulmonary hypertension, their families and caregivers across the United Kingdom. PHA UK works to improve awareness, access to specialist care and quality of life while championing the needs of the PH community through education, resources and advocacy. phauk.org

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.

All articles on Pulmonary Hypertension News are original content produced by in-house writers and editors. Occasionally, we seek the opinion of outside experts for interviews and Q&As. pulmonaryhypertensionnews.com

Pulmonary Hypertension Knowledge Sharing Platform

A platform created by the Alliance for Pulmonary Hypertension (AfPH), featuring a centralized library containing almost 900 expert-curated resources, in various formats and languages, a section with the latest News, updated with an average of 15-20 entries per month, a calendar of the main scientific events, and sections dedicated to the Alliance for Pulmonary Hypertension’s three key educational programs, its comprehensive live webinars, the peer-to-peer support “PEP talks” video series, and a section devoted to our educational campaigns. ph-ksp.com

Genetic and Rare Disease (GARD) 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. Link to their Pulmonary Arterial Hypertension resource page: rarediseases.info.nih.gov

Cure HHT

Cure HHT is dedicated to finding a cure for hereditary hemorrhagic telangiectasia (HHT) while improving the lives of everyone affected by the disease. Through patient support, education, advocacy and research, Cure HHT brings together patients, families, healthcare professionals and researchers to advance better diagnosis, treatment and understanding of HHT. curehht.org

TBX4Life

TBX4Life is a global community dedicated to supporting people and families affected by TBX4-related disorders, including TBX4 syndrome and associated pulmonary hypertension. Through education, advocacy, research and connection, TBX4Life works to increase awareness, advance understanding of these rare genetic conditions and help accelerate better diagnosis, care and treatment for those affected. tbx4.org

Rare Foundation

The RARE Foundation is a 501(c)(3) nonprofit, nonpartisan organization powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community. rareadvocates.org

ClinicalTrials.gov

ClinicalTrials.gov is a free, searchable database of clinical studies from around the world. Patients, caregivers and healthcare professionals can use it to explore ongoing and completed research studies, learn about eligibility and study locations, and discover opportunities to participate in clinical trials, including research focused on pulmonary hypertension and other rare diseases.

EU Clinical Trials Register

EU Clinical Trials Register (EU CTR) is a searchable database of clinical trials conducted in the European Union and European Economic Area. Patients, caregivers and healthcare professionals can use it to find information about clinical trials, including study locations, conditions being studied, trial status and eligibility, helping people discover research opportunities across Europe. clinicaltrialsregister.eu

Canadian Clinical Trial Search Portal

Canadian Clinical Trial Search Portal is a national resource that helps patients, caregivers and healthcare professionals find clinical trials taking place across Canada. Users can search for studies by health condition, treatment, location and other criteria, making it easier to discover research opportunities and learn how to participate in clinical research. clinical-trials-search.canada.ca

NORD

The National Organization for Rare Disorders (NORD®) was founded after the passage of the Orphan Drug Act of 1983 (ODA) to formalize the coalition of patient advocacy groups that were instrumental in passing that landmark law. Since then, NORD has been a national steward and a steadfast partner, helping those who battle and care for people with rare diseases feel seen, heard, supported, and connected. rarediseases.org

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. stoptheclot.org

Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation is committed to accelerating research, empowering our community, and transforming care so that everyone with pulmonary fibrosis can live a better life. Our ultimate goal is to find a cure for pulmonary fibrosis. pulmonaryfibrosis.org

PF Warriors

PF Warriors is a global support network that provides education, inspiration, and hope to individuals and families affected by pulmonary fibrosis. pfwarriors.org

Pulmonary Fibrosis News

Pulmonary Fibrosis News is a digital platform intended to provide the pulmonary fibrosis (PF) community with the most recent news and information on PF, as well as first-hand community perspectives from our patient and caregiver columnists.

All articles on Pulmonary Fibrosis News are original content produced by in-house writers and editors. Occasionally, we seek the opinion of outside experts for interviews and Q&As. pulmonaryfibrosisnews.com

Foundation for Sarcoidosis Research

The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since its establishment in 2000, FSR has fostered over $9 million in sarcoidosis-specific research efforts. stopsarcoidosis.org

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. srfcure.org

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 scleroderma.org

Scleroderma News

Scleroderma News is a digital platform intended to provide the scleroderma community with the most recent news and information on the disease, as well as first-hand community perspectives from our patient and caregiver columnists.

All articles on Scleroderma News are original content produced by in-house writers and editors. Occasionally, we seek the opinion of outside experts for interviews and Q&As. sclerodermanews.com

Right 2 Breathe

The Right2Breathe Pulmonary Chat Online Patient Support program is a FREE online chat and live video conference, hosted three times per months with medical experts providing presentations and answering patient and caregiver questions about living with Asthma, COPD, Pulmonary Fibrosis, and other respiratory diseases. right2breathe.org

Good Days

Good Days is a nonprofit organization dedicated to helping people living with chronic and life-altering conditions access the medications and treatments they need. Through financial assistance, transportation support and other programs, Good Days helps reduce the financial barriers that can prevent patients from receiving essential care. mygooddays.org

Health Well Foundation

The HealthWell Foundation is a leading independent non-profit dedicated to improving access to health care for America’s underinsured. They are a 501(c)(3) independent non-profit organization providing financial assistance to adults and children to cover the cost of prescription drug coinsurance, copayments, deductibles, health insurance premiums and other selected out-of-pocket health care costs. healthwellfoundation.org

The Assistance Fund

The Assistance Fund is an independent 501(c)(3) organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses. tafcares.org

Patient Advocate Foundation

Patient Advocate Foundation is the most comprehensive nonprofit in the United States dedicated to helping patients navigate, access, and afford the care they need. Patient Advocate Foundation and PAN Foundation announced a strategic merger in 2026. clinicaltrials.panfoundation.org

ATS

The American Thoracic Society is the world’s leading medical society dedicated to accelerating the advancement of global respiratory health through multidisciplinary collaboration, education, and advocacy. Core activities of the Society’s more than 22,000 members in 133 countries are focused on leading scientific discoveries, advancing professional development, impacting global health, and transforming patient care. site.thoracic.org

CHEST

The American College of Chest Physicians (CHEST) is the global leader in advancing best patient outcomes through innovative chest medicine education, clinical research, and team-based care. chestnet.org

ERS

The European Respiratory Society (ERS) is the largest scientific and clinical organization in respiratory medicine in Europe. Our members are scientists, clinicians, allied healthcare professionals and other experts from around the world. ersnet.org

PVRI

The Pulmonary Vascular Research Institute (PVRI) creates open and inclusive platforms where early career professionals and world-leading experts in PH can share research and collaborate on new ideas. We bridge the divide between low, middle, and high-income countries to increase understanding on a global level. pvrinstitute.org