Pulmonary arterial hypertension (PAH) is a rare but serious condition, however great advancements have been made in recent years. There are now a variety of treatment options available, but our understanding of the disease is still growing and it’s important that people living with PAH know what to expect during their journey.
The PAH Patient Charter was created in collaboration with an international group of patients, patient advocacy group representatives, and healthcare professionals.
It leverages their personal experiences and expertise with PAH to provide you with the information you need to ensure you’re aware of the level of care you should be able to expect, from diagnosis to the ongoing management of your condition.
We hope that the information in the Charter will help you, your healthcare professionals, and caregivers to:
Communicate effectively with each other
Make decisions together
Agree on a care plan that is appropriate for you
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The PAH Patient Charter is a consensus outlining the standards of holistic care that we believe everyone with PAH should receive.
It is based on the most current (2015) European Society of Cardiology/European Respiratory Society (ESC/ERS) guidelines, which are used internationally, and has been developed by an international group of patients, patient advocacy group representatives and healthcare professionals.
Breathe In, Speak Out recognises that everyone has a story to tell about their fight with PAH, and has been created to help amplify your voice and your experiences.
As part of this conversation kit, you will find useful tools, created with support from people living with PAH, that will help you build your confidence and expertise in managing your condition.
Use this worksheet to identify what is most important to you and your personal goals as you manage your PAH condition. The worksheet is intended to help you think about your personal PAH management goals; you can work with your friends and family to do so, and then use the worksheet to help guide discussions with your healthcare team. This will help them to create an appropriate management plan, tailored to your own goals.