Our Patient Advisory Groups or PAGs are made up of people who have an interest in a particular lung condition or topic related to lung health. Members share their views and get involved in projects to help improve treatment and healthcare.
Those looking to get involved in our PAGs are encouraged to sign up to our free, online, self-learning programme, the European Patient Ambassador Programme. EPAP introduces patients and carers to some of the basic skills and knowledge needed to represent yourself and others successfully.
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“For patients with a rare disease, who live in a small country, it is important and stimulating to look beyond borders. Connecting with other patients and patient organisations offers us the opportunity to do something concrete about the quality of our lives.”
Chris, Sarcoidosis PAG and Sarcoidose.nl
Most of the PAGs are open to new members from European countries. We would like to hear from you if you:
Those looking to get involved in our PAGs are encouraged to sign up to the European Patient Ambassador Programme, our free, self-learning platform that will help you to get started in patient involvement and advocacy. Made up of 8 modules, you will learn how to represent yourself and others living with chronic conditions with the option to work through the modules at your own pace and save your progress as you go along.
Our EPAP modules are now available in English, Dutch, French, Italian, German, Spanish and Portuguese.
Learn moreThe aim of our PAGs is to help others living with lung diseases, often by advising doctors and researchers or producing resources and information. In a PAG you will be joined by other patients and representatives of patient organisations relevant to your condition.
As a member of a PAG, you will be asked to share your views and experiences on living with your condition. This might include how it impacts your daily life, your thoughts on treatment and aspects of your condition that may not have been researched. You also have the chance to highlight any information gaps or priorities that you think are important to patients and caregivers.
Our groups meet by video call (Zoom or Microsoft Teams) and communicate by email. Representatives from the group may also be invited to face-to-face meetings in Europe. If your health needs would make it difficult for you to attend a face-to-face meeting, we will support you to attend remotely.
Members must agree to keep information about the content and development of projects they are involved with confidential until the outcomes are formally published.
ELF will provide support, guidance and training to help you share your perspective and get involved in projects. This includes our European Patient Ambassador Programme (EPAP) which introduces patients and carers to some of the basic skills and knowledge needed to represent yourself and others successfully. Modules include working with the media, participating in healthcare conference and supporting research.
We will also cover any costs for getting involved, such as telephone calls, travel and accommodation costs. Please note that this is a voluntary role and we are unable to pay for your time.
You can read about the aims, membership and practical arrangements of our PAGs in our PAG Terms of Reference.
