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.

practical
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Pulmonary Hypertension Association South Africa

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

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Jenna Lowe

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:

  • To raise awareness for Pulmonary Hypertension in South Africa, to encourage and facilitate earlier diagnosis, and to provide better care for patients, caregivers and patient families.
  • To increase public awareness around the shortage of organ donors in South Africa, address misconceptions and drive registration.
  • To create platforms that raise funds for, and donate money to, campaigns and projects that are directly related to Pulmonary Hypertension and Organ Transplantation in South Africa.
  • To support projects and people who educate and train individuals, families and organisations in broad or specific areas of Pulmonary Hypertension and Organ Transplantation.

Link to https://jennalowe.org

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Rare Diseases South Africa

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

pah-europe

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

ph-library

PH Library

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

The PAH Patient Charter

The PAH Patient CharterThe 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.

References

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National Psoriasis Foundation. Guttate psoriasis. Available at: https://www.psoriasis.org/about-psoriasis/types/guttate Accessed: June 2020.
British Association of Dermatologists patient hub; Psoriasis: an overview. Available at: https://www.skinhealthinfo.org.uk/condition/psoriasis/ Accessed: June 2020.
DermNet NZ. Guttate psoriasis. Available at: https://dermnetnz.org/topics/guttate-psoriasis/ Accessed: June 2020.
National Psoriasis Foundation. About psoriatic arthritis. Available at: https://www.psoriasis.org/about-psoriatic-arthritis Accessed: June 2020.
WebMD. Skin problems and treatments: psoriasis. How severe is your psoriasis? Available at: https://www.webmd.com/skin-problems-and-treatments/psoriasis/how-severe-your-psoriasis Accessed: June 2020.
Walsh JA, et al. Psoriasis (Auckl). 2018; 8:65–74.
GP notebook. NAPSI. Available at: https://gpnotebook.com/simplepage.cfm?ID=x20121104114703605084 Accessed: June 2020.
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