Idiopathic/heritable pulmonary arterial hypertension
Synonyms: Idiopathic and/or familial pulmonary arterial hypertension
A form of pulmonary arterial hypertension (PAH) characterized by elevated pulmonary arterial resistance leading to right heart failure; it is progressive and potentially fatal. The majority cases have an identifiable genetic cause but a significant proportion are idiopathic.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Reference: Access aggregated data from Orphanet at Orphadata.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version April 2024
Newly diagnosed with
Idiopathic/heritable pulmonary arterial hypertension?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
Cardiac Community Advocacy and Support Initative
To advocate for, raise awareness about, and support people living with cardiovascular diseases, with a focus on the rare disease pulmonary hypertension.
Heart of a Giant Foundation
The mission of the HGF is to achieve better health outcomes for heart diseases and related chronic health conditions in our communities and enhance the quality of life through health education, care support, and connection to community resources.
Hellenic Community for Pulmonary Hypertension
The " Hellenic Community for Pulmonary Hypertension " is a non-profit organisation, of a voluntary nature, which began its work at the end of 2012 by the sufferers themselves and their caregivers, with the main objective of recognising, consolidating and updating all issues surrounding this unknown disease to the general public.Representation of the PH sufferers of the Greek & Cypriot territory.
Help Hope Live
Help Hope Live assists individuals living with catastrophic injuries and illnesses to fundraise toward their medical expenses and related costs.
NGO Association of patients with Pulmonary Hypertension
Mission - to protect the rights of people with rare diseases - pulmonary hypertension, to defend their right to treatment, timely diagnosis and social protection.
Pulmonary Hypertension Association of Canada
To empower the Canadian pulmonary hypertension community through support, education, advocacy, awareness, and research.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
Clinical Trials
For a list of clinical trials in this disease area, please click here.