Stepping Up for Skin Lupus: An ePAG in ERN Skin

Lupus Europe is proud to announce a significant milestone in the representation of people with skin lupus. Annemarie Sluijmers, Vice Chair and Secretary of Lupus Europe has taken an important step by becoming an ePAG (European Patient Advocacy Group) Patient Advocate of ERN Skin.Annemarie became an ePAG in July 2023. Her recent attendance at the ERN Skin Board Meeting in Paris on November 6, 2023, marks an important advancement for the lupus community.

 

ERN Skin, a dedicated network addressing complex skin disorders, had its board meeting to discuss the future direction of the structure of the network and its thematic groups, and as such the patient advocacy within ERN Skin. For the first time, the voice of people with skin lupus was thoroughly represented at ERN Skin. This representation is a vital step forward in ensuring that the specific challenges and needs of those affected by skin lupus and lupus with skin manifestations are heard and recognised.

 

AIBD/TOXITEN: A New Focus for Skin Lupus

 

During the meeting, a structural evolution of thematic groups was proposed. The groups have now been streamlined into four main categories:

 

Genodermatoses-1

Genodermatoses-2

AIBD/TOXITEN

ALLOCATE

 

Skin lupus will fall under the AIBD/TOXITEN group. The AIBD/TOXITEN group is a subset focusing on auto-immune and toxic epidermal diseases. This classification underscores the significance of lupus as an autoimmune condition with dermatological manifestations, ensuring that it receives the appropriate focus and resources.

Building a Strong Community in ERN Skin

 

As a newcomer to ERN Skin, Annemarie is swiftly becoming acquainted with the network’s intricacies, its organisational structure, and its ambitious work. A key priority is identifying a lupus dermatologist. A lupus dermatologist will represent together with Annemarie the lupus community in this new thematic AIBD/TOXITEN group.

 

The collaboration and support within the ERN Skin community have been exceptional. Fellow ePAGs are providing Annemarie with invaluable support as she navigates this new role.

 

For more updates, stay tuned to our blog and upcoming newsletters. Go here to find out more about work on Lupus and the Skin.