RAISING AWARENESS OF SARCOIDOSIS
Sarcoidosis affects 1-2 per 10,000 people in the UK; very few people have heard of the condition. SarcoidosisUK know that the public and healthcare professionals should be much more aware of what sarcoidosis is and how it affects the lives of people affected. This page explains why this goal is so important to us and how we are going about raising awareness of sarcoidosis.
The online SarcoidosisUK Store was launched in 2018. It is a one-stop-shop for all SarcoidosisUK awareness materials, merchandise and patient information. The online SarcoidosisUK Shop continues to be a success and allows people to contribute to the charity in return for custom made merchandise to help spread awareness of sarcoidosis. We’ve produced awareness badges that explain a sarcoidosis cough or request that people are extra careful around you. We’ve heard wonderful stories of these badges helping people during the coronavirus outbreak.
National and International Advocacy Work
Leo Casimo, Senior Executive at SarcoidosisUK, is representing the charity on the European Lung Foundation Patient Advisory Committee and Patient Advisory Group. Leo is also a member of the BTS Sarcoidosis Registry Steering Group.
Social Media Presence
We have been expanding our social media presence and increasing our online presence; our website has attracted over 2.3 million page views in the last 12 months.
Early in 2017 we changed our name to SarcoidosisUK. The resulting name change campaign hugely increased the visibility of SarcoidosisUK to those in need of our support and the public’s awareness of sarcoidosis in general.
Online presence: A growing and trusted online presence provides a platform for information and campaigns which raise sarcoidosis awareness. The new SarcoidosisUK website has attracted an increase of 270% unique visitors in June-September 2017 compared to the same period in 2016. This was helped by running an advertising campaign using Google AdWords (using a Google Grant, at no cost to the charity). Since the campaign started in June 2017 we have more than doubled the reach of our adverts; over 160,000 people have seen our adverts on Google in this time!
Social media presence: Social media enables people to connect, share knowledge and spread the word about sarcoidosis. The SarcoidosisUK Facebook group has grown in membership by 150% since last year. We also have a steadily growing Twitter page and online forum.
Other engagement: There are a growing number of SarcoidosisUK members, fundraisers and support groups attendees, all raising the profile and public awareness of sarcoidosis. Up to September 2017: a record 27 individuals have been fundraising for SarcoidosisUK research and more than 300 people have attended our SarcoidosisUK Support Groups across the UK.
You Can Help to Raise Awareness…
- Talk to your friends, family and colleagues about your sarcoidosis and how it affects you. Direct them to our website for general information. They could also consider a call with the SarcoidosisUK Nurse Helpline.
- Talk to your GP or other healthcare professional about your sarcoidosis. Direct them to our website for more information on sarcoidosis and referrals to a specialist.
- Talk to your employer about your sarcoidosis and how it affects your ability to work, directly or directly. Give or show them our Information for Employers Leaflet.
- Become a Patient Ambassador for sarcoidosis at a National or European Level.
- Share your experience with others – Submit a ‘Patient Story’ to SarcoidosisUK.
- Sign up to our Newsletter, Facebook page and become a Member to stay up to date with our latest awareness campaigns.
- Organise your own awareness event. This could also be a fundraiser. Get in touch for help and advice.
- If you have other ideas about raising awareness of sarcoidosis, that’s great! We would love to hear from you – please contact us.
SarcoidosisUK has more than 10 information leaflets. These leaflets provide medical information on different types of sarcoidosis as well as other important topics such as fatigue and information for employers. More than 5,000 have been distributed across the UK and are available in selected clinics and hospitals. The leaflets are a fantastic way to increase public awareness of sarcoidosis in these medical centres. In addition, GPs and non-sarcoidosis specialists can use the leaflets to educate and inform themselves on the basics of sarcoidosis.
All of our leaflets are available as printed copies and to read and download online as pdfs. New leaflets currently being produced include Sarcoidosis and the Liver/Endocrine system and Sarcoidosis Nutrition.
SarcoidosisUK is the #1 sarcoidosis patient representative in the UK. We engage with healthcare professionals and the healthcare system at a number of levels to improve the state of sarcoidosis care. This advocacy work raises the profile of the condition – policy and decision makers are increasingly unable to ignore the fact that sarcoidosis deserves a much higher level of recognition and support.
For example SarcoidosisUK is currently sitting on two patient advisory groups, informing the development of important sarcoidosis policies. We are representing patients at a European level, informing the creation of new sarcoidosis treatment guidelines being written by the European Respiratory Society. We are also the patient representative on a policy working group deciding the commissioning strategy for Infliximab as a medication available to certain sarcoidosis patients on the NHS.
SarcoidosisUK is working with Healthwatch Plymouth and our South West Support Group to produce a report on the state of care of sarcoidosis in the south west of England.
SarcoidosisUK are coordinating a project for 2018, mapping sarcoidosis care across the UK. We will work alongside healthcare professionals, patients, caregivers, service providers and other charities. The final report will be used to inform changes to be made to improve the standard and consistency of care. It will be published and promoted to raise the profile of sarcoidosis.
Engagement with Healthcare Professionals
SarcoidosisUK has contact with sarcoidosis healthcare professionals across the UK. This crucially raises awareness of sarcoidosis in this sector. We are continually adding to our website information for healthcare professionals such as our patient information leaflets, Consultant Directory and FAQ page. These materials have meant SarcoidosisUK is a trusted source of sarcoidosis-related information for GPs, specialists and other healthcare professionals in the UK.
SarcoidosisUK have a close working partnership with the sarcoidosis multi-disciplinary team at Kings College Hospital in South London. This mutually beneficial relationship helps inform our informational materials, support services and understand how best to improve awareness of sarcoidosis.
Sarcoidosis in the News
SarcoidosisUK publish and circulate sarcoidosis-related news stories from across the web. We can track and contribute to an increasing awareness amongst the general public through local, national and international media.
The Classic Motorbike Show - NEC
SarcoidosisUK awareness being spread in The Classic Motorbike Show – NEC. The thousands of people in attendance have become more informed, including Mike Brewer from Wheeler Dealers!
Related content from SarcoidosisUK:
SarcoidosisUK fund world-leading research into sarcoidosis. Our goal is to find a cure for the condition.
Do you want to find a consultant? Use our directory to find a sarcoidosis specialist or clinic near you.
We would love to hear from you. Please get in touch with any questions, comments or suggestions.