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.
The Pulmonary Hypertension Association South Africa (PHA SA) was founded by patients, for patients - we are here for you as a source of support, connection and hope. Our patients are a knowledgeable, inclusive and an inspiring group who are eager to listen and share their experiences.
The voice of the PH community is built on the personal stories of patients, caregivers, family and friends and medical professionals. Each of these stories is a powerful tool in educating and raising awareness amongst the general public about PH.
Each of us has a story to tell. Your voice and your story are important to us. The first step in raising PH awareness across the country starts with you. Together we are stronger and can do more: becoming a member of PHA SA means that you are helping to create a unified community across the country.
Link to http://www.phsa.org.za
Twenty-year-old Jenna Lowe influenced massive social change in South Africa. She fought for awareness and support of Pulmonary Hypertension and increased the number of organ donors by tens of thousands with her internationally acclaimed Getmeto21 campaign.
Following Jenna’s death in June 2015 the trustees decided to continue the work of the trust in order to honour Jenna’s remarkable legacy.
The objectives of the trust are as follows:
Link to https://jennalowe.org
Founded in 2013, Rare Diseases South Africa (RDSA) is a non-profit organisation advocating to ensure that people living with rare diseases and congenital disorders experience greater recognition, support, improved health service and better overall quality of life.
Link to https://www.rarediseases.co.za
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