8 June, 2020 – With the Global Non-Melanoma Skin Cancer Awareness Day nearing on the 13^th of June, the European Cancer Patient Coalition (ECPC) launched today a Non-Melanoma Skin Cancer Online Community- Building Toolkit, the first such toolkit provided globally to anyone looking to create online communities to support patients, in particular those suffering from advanced non-melanoma skin cancer (NMSC), their families and carers.

Currently, most patients don’t have a way to connect to others like them, to share experience and support. What many do not realise is that most patients living with advanced NMSC experience a heavy emotional toll as a result of the disease.¹ ECPC’s NMSC Online Community-Building Toolkit supports building online communities to connect all those who have been severely affected by NMSC, with practical guidance and ready-to-use material. It is available for download from https://ecpc.org/get-involved/non-melanoma-skin-cancer/.

On the occasion of the launch of the first-ever community-building toolkit focused on patients suffering from NMSC, Antonella Cardone, Director of ECPC said: We want to empower anyone who wants to help those who are suffering from the disease, in particular those with advanced diagnosis. Anyone can put the toolkit to use and help improve lives of the patients. We are determined to keep advocating for patients suffering from NMSC. The silent epidemic we are seeing reflected in the millions of new cases diagnosed every year should sound the alarm for everyone, in particular the policy makers. We need European consensus and all the European countries to recognise NMSC as an occupational disease, so that crucial prevention and treatment programmes may be put in place and made available for anyone at risk and in need.

Non-melanoma skin cancer is an occupational disease

NMSC refers to all types of cancer of the skin that are not melanoma. An estimated 2-3 million cases are recorded in the world every year,² with the number of diagnosed cases increasing by 3-8 percent annually. ^3,4 Europe is particularly impacted by NMSC, which accounts for approximately 90 percent of all skin cancers.⁵

Last year, together with the European Academy of Dermatology and Venereology (EADV), ECPC launched the first ever Global NMSC Awareness Day to raise awareness and highlight the disproportionate impact of the disease on outdoor workers. Exposure to ultraviolet radiation (UVR) is the most important external risk factor for the development of skin cancer,⁶ and outdoor workers, who are exposed to high ambient UV radiation levels during most of their work hours, are at increased risk. In fact, with five years or more of outdoor work the likelihood of suffering from NMSC can increase three-fold.⁷

Despite the threat it constitutes to outdoor workers, very few European countries recognize UVR-inflicted occupational skin cancer, including NMSC, as an occupational disease. Solar radiation remains remarkably absent from the EU directive on occupational carcinogens and mutagens.⁸ While there is solid evidence that outdoor workers in various workplaces across Europe are exposed to elevated levels of UVR and are consequently at a significantly increased risk of developing NMSC, this has yet not been translated into a common European regulatory approach.⁹ The lack of official recognition of occupational skin cancer, hinders the implementation of effective prevention and treatment measures.¹⁰

Masja Ros, Communications and Social Media Manager, Stichting Melanoom , a Dutch foundation for melanoma patients, said: Receiving a cancer diagnosis can be devastating to an individual. Getting support from patients who are in the same situation can help with the burden of living with the disease as well as facing treatment and the side effects. We cannot emphasize enough the immense importance of the possibility for peers to be able to connect to peers 24/7. Patients are empowered through groups that provide reliable, independent and trustworthy information very quickly and on daily basis.