Regional EB CABs
Regional voices, local expertise
People living with epidermolysis bullosa (EB) share many experiences across countries and regions. At the same time, the reality of living with EB can differ considerably depending on the healthcare system, access to treatment and specialised care, language, culture and available support.
Regional EB CABs provide an opportunity to better represent this diversity of lived experience and to make regional expertise directly accessible to researchers, companies, patient organisations and other stakeholders.
Why regional representation matters
The International EB CAB brings together people with EB and family members from different parts of the world. However, no international group can fully represent the many different realities of living with EB around the globe.
Healthcare systems, access to therapies, reimbursement, social support and the challenges faced by EB families can vary significantly between regions. Regional EB CABs can provide more detailed insight into these local circumstances, priorities and needs.
They can be contacted directly by stakeholders who would like to understand the perspective of the EB community in a specific region or involve people with lived experience in a regional project.
Who can be part of a regional EB CAB?
Regional EB CABs may have broader membership criteria than the International EB CAB.
Members do not necessarily need to meet all of the experience or educational criteria required for membership of the International EB CAB. What is essential is their lived experience of EB and their ability to contribute perspectives from people with EB and families in their region.
This local knowledge is highly valuable. It can provide insight into everyday life with EB, regional healthcare structures, access to care and treatment, and the priorities and challenges of the local EB community.
EB CAB
German-speaking region
The first regional EB CAB has been established in the German-speaking region, bringing together members from Germany, Austria and Switzerland.
The EB CAB German-speaking region can be contacted directly by researchers, companies, patient organisations and other stakeholders seeking input from people with lived experience of EB in these countries.
Building more regional EB CABs
We would like to see regional EB CABs develop in other parts of the world.
Every region is different, and we do not believe that one model will work everywhere. However, our experience in establishing the International EB CAB and the first regional EB CAB has given us practical knowledge that we are very happy to share.
If you are part of the EB community and would like to establish a regional EB CAB, we can support you with our experience and lessons learned, including questions around membership, organisation and collaboration with external stakeholders.
Our aim is not to create identical groups, but to help EB communities develop regional structures that work for their own needs and circumstances.
Interested in establishing a regional EB CAB? Get in touch with us.