This month’s patient spotlight, during Sarcoidosis Awareness Month, catches up with members of the ELF Sarcoidosis Patient Advisory Group (PAG), who are about to launch a patient charter. It includes a call to action to raise awareness and understanding of the impact of this condition, which is often misdiagnosed and misunderstood. The Sarcoidosis PAG also wants to highlight other awareness-raising activities within their national patient organisations which link closely with ELF’s priorities.
The Sarcoidosis Patient Advisory Group – or SPAG as we like to call ourselves – is a group of international patient advocates, representing sarcoidosis patients and sarcoidosis patient organisations from across Austria, Germany, Italy, The Netherlands, Serbia, Spain, Switzerland, UK and USA.
We are committed to improving patient care and quality of life for people affected by sarcoidosis, a rare condition.
The charter outlines our joint strategy for the future improvement of patient care and quality of life.
Our hope is that this patient charter, with its Call for Action, will raise awareness and understanding of the impact of sarcoidosis among patients, caregivers, healthcare professionals, policy makers and the general public.
Please read, download and disseminate our Sarcoidosis Patient Charter, available at https://europeanlunginfo.org/sarcoidosis/library/
It is currently available in Dutch, English, German and Spanish.
Translations into French, Italian and Serbian will be available soon.
We elected three Sarcoidosis PAG representatives to take part in the European Respiratory Society (ERS) Task Force that updated the sarcoidosis treatment guidelines, which were published in 2021. We are helping to disseminate these guideline recommendations by producing a lay summary for patients and the general public.
Three events from sarcoidosis patient organisations in the UK, Italy and USA are taking place this month:
Foundation for Sarcoidosis Research (FSR) webinar: Sarcoidosis and the spine – 12 April
An educational event about Neurosarcoidosis, a rare and complex form of the condition. Patients may find themselves dealing with a range of symptoms due to the unique presentation of sarcoidosis in the brain or spine. Find out more and register.
SarcoidosisUK Patient Day – 28 April
SarcoidosisUK and The Royal Brompton & Harefield Hospitals are hosting a virtual Sarcoidosis Patient Day. Specialists will be covering a range of topics including advanced pulmonary sarcoidosis, cardiac sarcoidosis and neurosarcoidosis. Register for free.
Amici Contro la Sarcoidosi Italia (ACSI): National conference on sarcoidosis diagnosis and treatment – 30 April – 1 May
To celebrate their 10-year anniversary, Amici Contro la Sarcoidosi Italia (ACSI), the only national association in Italy dealing with sarcoidosis, has organised a first national conference on sarcoidosis diagnosis and treatment. The conference will highlight the ERS guideline recommendations and the American Thoracic Society (ATS) diagnosis guideline which were also recently published. Taking place in Bologna on 30 April – 1 May, experts involved in producing the guidelines will take part. Find out more.
Examples of awareness-raising activities taking place this month in UK and Spain are below:
Build your own marathon fundraising challenge
Sign up to the SarcoidosisUK Build Your Own Marathon challenge! As those who are affected by sarcoidosis will know, the disease is not a ‘one size fits all’. Not everyone will enjoy taking on the same type of challenge, so that’s why this April SarcoidosisUK is giving you the chance to create your own version of a marathon, whatever that may look like. Find out more and sign up here: https://www.justgiving.com/campaign/buildyourownmarathon
Sarcoidosis Awareness Month Playlist
SarcoidosisUK has also created a Sarcoidosis Awareness Month Playlist dedicated to all who are affected by sarcoidosis. If you would like to add a song that has helped you through a difficult time, put a smile on your face or reminds you of someone that has sarcoidosis, all you have to do is make a donation! The aim is to create a unique playlist that can be shared by the whole sarcoidosis community and help raise vital funds at the same time. Add your song here: https://givepenny.com/sarcoidosis_awareness_month_playlist
Asociación Nacional de Enfermos de Sarcoidosis (ANES)
The National Association of Patients with Sarcoidosis in Spain (ANES) celebrates National Sarcoidosis Awareness Day on 13 April. They are planning a series of actions across the country to draw attention to sarcoidosis. This includes lighting up emblematic buildings in the colour purple. ANES is also asking their members to carry out their own ideas and send pictures or videos. They plan to prepare a national video collage of all the actions made. They are also producing a new sarcoidosis awareness patient video.
This year, we have met with the Chair of the ERS Assembly for Interstitial Lung Disease to exchange plans and priorities. We hope to build on this in the future as we work more closely together to ensure holistic care for people with sarcoidosis.
We continue to forge links with healthcare professionals involved in the treatment and care of people with sarcoidosis, for example with members of the World Association of Sarcoidosis and other Granulomatous Disorders (WASOG) and healthcare professionals within ERN-Lung.
