Practical Support and Resources
Practical support and resources
For anyone living with a rare, chronic condition, having access to practical support and resources can be extremely valuable.
For those living with pulmonary arterial hypertension (PAH) it is important to know there are a range of support options available, whether it be family, friends, other people living with PAH (peer support), patient organisations or of course, your healthcare team.
Here is a list of useful links to patient associations and additional patient support websites.
PHA Europe (The European Pulmonary Hypertension Association)
An umbrella patient association made up of national PH associations from across Europe. On this site, you will find information about PH, new research, current events, projects, activities and additional resources about living
well with PH. It also includes a directory of European patient associations to enable you to find your local patient association and peer support networks.
Link to https://www.phaeurope.org
A website developed by patient organisations, PHA Europe and PHA US, to provide information and a library of high quality resources for anyone who has been diagnosed with PAH as well as their families and carers. Resources include information about PH and PAH, research, treatment and support.
Link to http://www.ourphlibrary.com
PAH Patient Charter
The PAH Patient Charter sets out the standards people living with PAH should reasonably expect from their care. The PAH Patient Charter is based on the European Society of Cardiology/European Respiratory Society (ESC/ERS) international guidelines and was developed by Janssen in collaboration with a multidisciplinary group of PAH specialists and PAH patient group representatives.