Pulmonary venoocclusive disease
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version September 2023.
Newly diagnosed with
Pulmonary venoocclusive disease?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
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.
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.
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.
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.
For a list of clinical trials in this disease area, please click here.