Our Sarcoidosis Patient Advisory Panel

Ensuring patient needs are at the heart of what we do

The supporters of SarcoidosisUK, patients, and their family and friends’ network play a vital role in the charity. We continue to listen to those affected by sarcoidosis to ensure that our activities are always driven by patient need, and that the patient voice is heard.

Patient Advisory Panel’s Four Main Objectives

1. To provide a platform for panel members to represent anyone affected by sarcoidosis.
2. A direct communication channel to the charity management to share their experience and influence SarcoidosisUK’s activities.
3. Give an insight into the challenges faced by sarcoidosis patients to enable the charity to advocate for the best possible treatments and care.
4. For panel members to help guide SarcoidosisUK’s activities and strategies. To provide feedback when requested which may include taking part the selection process for research funding.

We need your help to ensure we capture accurate information about patient need. If you or someone close to you has lived experience of sarcoidosis, whether past or current, and you would be interested in participating as a member of the SarcoidosisUK PAP, please get in touch by filling out the form below. You can also email our Senior Executive, Graham Bloye, on graham@sarcoidosisuk.org if you have any questions.

The Patient Advisory Panel will be comprised of a maximum 15 people (adults over 18 years of age). We seek a membership that is representative of the different types of sarcoidosis and the diversity of sarcoidosis patient population as we understand that the experience and needs of individual sarcoidosis patients may be different. For more information, click below to see our Terms of Reference.