The needs and lives of patients living with atopic eczema are very specific sometimes, that is why at EFA we are happy to announce the launch of a working group on Atopic Eczema. The working group will be a genuine forum to link with our members specifically on this disease, to share knowledge and experiences, to structure at a regional level the issues affecting patients, and give more visibility to the disease. The working group kicked off with an online webinar.
The discussion we held online on January 31st was the first one of many to come, a first heads-up among EFA members active on atopic eczema support and advocacy. During the webinar, we noted many burning issues from AE patients. For example, patients and their representatives are calling for better treatments since current therapies are not equally effective for every patient. Among the 17 participants there was also an agreement that quality of care needs to be improved by, for example, extending the role of nurses on the management of AE, as this role is not yet a reality everywhere in Europe. This thinking is linked to the fact that AE patients’ pain is not well recognized and should therefore be better explained, to gain more acceptance within the healthcare community, physicians and lay-public. The economic burden AE patients carry was also brought up to the conversation, since many available therapies and medication prescribed are not yet reimbursed.
European Atopic Eczema Awareness Day
EFA will soon publish the results of a Quality of Life survey among eczema patients living in 9 european countries. It will serve to inform the public during the First Atopic Eczema awareness day, an EFA led initiative marked next September 14th 2018. EFA membership and especifically the members of the Atopic Eczema working group, will be fundamental in communicating the results of the report at national level. You can register here: http://www.efanet.org/resources/events
To know more about our activities on atopic eczema, please visit our atopic eczema project.