Anniversary: 10 Years EB-CLINET
In 2011 the set up of the EB-CLINET network was initiated by the head of the Department of Dermatology at the University Hospital Salzburg, Prof. Helmut Hintner and the leader of the Academy at the EB House Austria, Dr. Gabi Pohla-Gubo.
On the following pages you will find information about the motivation and the beginnings of the network, about what has been achieved since then and on where our path will lead us in the future.
EB-CLINET - How it all began
EB-CLINET was founded 2011 by the former head of the Department of Dermatology at the General Hospital Salzburg, Professor Helmut Hintner, and Dr. Gabriela Pohla-Gubo.
Unequal access to care and treatment for EB patients in the European countries and worldwide was clearly the the primary motivation for the establishment of EB-CLINET. The founding team wanted to secure the professional care of patients living with EB on site - in their home country, without exhausting trips, without language difficulties, without financial barriers but with high quality and humane access.
The idea was to have one EB expert or EB centre in every country of the European Union as central contact person for requests.
Dr. Pohla-Gubo sent out a questionnaire to 30 clinical contacts (the EU member countries in 2011 plus Croatia, Norway & Switzerland), which was returned by specialists from 24 countries in the first months.
Quite quickly, it became obvious that there is the need for connecting people working with EB not only in Europe but also worldwide, so the focus of the network was extended from an european-centred perspective to a global approach.
As the network was growing in the following years, the original idea of having one contact person per country developed into making EB-CLINET a platform for EB-related information for all international health care professionals who are interested in EB.
The initial big networking event was the “1st Conference of EB-CLINET” on 5-7 October 2012. 106 participants from 33 countries, amongst them lead clinicians and other senior staff from different Epidermolysis Bullosa specialist centres, gathered at the General Hospital, Salzburg to work together on strategies for the future.
Following EB-CLINET conferences in Salzburg (2013) and London (2015, together with the DEBRA International conference) were a wonderful opportunity to discuss the progress of the network such as EB registries, a directory of EB centers and laboratories or education and training in the field of EB.
Strongly convinced that cooperation creates strong synergies, the EB2017 Research and EB-CLINET conference were held together in 2017 in Salzburg. Following the motto “from bench to beside” both meetings provided an update on EB research and its translation to clinical benefit for patients.
EB-CLINET - where we are now
In 2019 Dr Sophie Kitzmüller took over the lead of the EB Academy at the EB House Austria and the lead of EB-CLINET from Dr Gabriela Pohla-Gubo.
„With EB-CLINET we wish to provide a platform for connection, communication, and collaboration.”
Dr. Sophie Kitzmüller
This new series of web-based informative events for health care professionals working in the field of Epidermolysis Bullosa was launched in March 2021. The seminars are covering different topics from different medical specialties. The live-talks give the opportunity to ask questions to experts in the respective field, recordings can be re-watched on our website. The kick-off event with the topic of ‘Oral health care in EB’ is followed by a seminar on ‘Psychosocial development and EB’ and will take place in November 2021.
A very lively part of EB-CLINET is the Nursing Forum for EB Care.
Initiated by the EB nurses José Duipmans (Netherlands) and Sharon Cassidy (New Zealand), this online email group intends to support nurses caring for people living with EB. EB-CLINET provides an easily accessible platform for the exchange of questions, knowledge and experiences between the members of the group to help improving the care for their patients.
The questions and topics discussed are collected in specific documents accessible to members.
In the last months, especially since the Corona Pandemic, the forum has proven to be a supportive resource to improve the care and treatment of people living with EB.
Interview with the Founder of EB-CLINET - Dr. Gabi Pohla-Gubo
- How was the idea for EB-CLINET born?
- Enquiries and calls for help from many countries within and outside Europe have shown that there is a great need for professional information and exchange of experience.The idea was to share our expertise and learn from others. The guiding principle was that the expertise should travel and not the patient!
- What have been the biggest challenges in the early days?
- Locating EB specialists internationally, precisely querying their respective expertise, and then cross-linking them well with each another.The latter was done, among other things, through the EB-CLINET conferences or the creation of an online database with all known centres worldwide.
- Did you ever imagine that EB-CLINET could develop like this one day?
- Of course! I always believed in it and since many friendships have developed over the years, I continue to believe in the motivation of everyone involved.
- Which influence does EB-CLINET have on the lives of those who are affected by EB?
- With a rare disease like EB, the wealth of experience of individual clinicians and other healthcare providers is limited. The international exchange of EB specialists and the jointly developed treatment guidelines (CPGs) are essential building blocks for treatment safety and improvement of the quality of life of patients.
- If you would have to describe EB-CLINET in five words, what would they be?
- Focus | Information | Cross-linking | Communication | Motivation
- How does your vision of EB-CLINET look like in the future?
- Expanding the network to reach also socially and economically less developed countries.Seeking new contacts and securing the next generation of medical staff through continuous training opportunities.To ensure that all EB patients have equal access to the best care.
EB-CLINET - what comes next
Since the beginning of the EB-CLINET initiative a lot has been accomplished. Strategies and tools have changed, some elements of the network have been stopped while some other new ideas were born and brought to life.
The success of the Nursing Forum for EB Care has proven the importance of our mission to foster cooperation between EB health care professionals. Creating possibilities for further Professionals Forums for different medical departments will be a perspective for the future.
Many efforts have been made to bring together different stakeholders in EB like clinicians, researchers, industry and patients and provide a huge amount of information about the many EB relevant topics at once. Complementary to these large-scale meetings, we also see a lot of potential in specialisation. For this, workshops focusing on a single topic are planned. There a group of experts in their respective field can work together and exchange their knowledge. With plenty of opportunities for discussion these workshops should represent a platform to find new ideas and approaches to unmet needs of patients.
Within the last months people all around the world started to make more use of the various possibilities of communicating virtually and online. Like many others, EB-CLINET benefits from this change, which offers new possibilities for education and training. We are glad to be able to work on further EB-CLINET Online Seminars to build up a comprehensive basis of online training possibilities for health care professionals working with EB.
Talking about the future always implies development. This is an important part of EB-CLINET. Our network of partners is the basis around which we are working to provide health care professionals with information and tools to help improve the lives of their EB patients. This is an ongoing process that, like the EB-CLINET initiative, is always subject to changes and further developments. Creating awareness, improving understanding, supporting education in and about EB is key to realize our common aim of finding the best treatments for EB patients.
And, last but not least, hopefully in the future we will be able find at least one health care professional in every country of the world, who would like to become an EB-CLINET partner and help to improve the lives of the people living with EB.
- We currently count 127 partners from 65 countries
- The EB-CLINET initiative is funded exclusively through donations
- All services offered by EB-CLINET are free of charge
• Hands-on workshop for hand surgery
• Two registry-workshops in Salzburg
• Lectures at many conferences
• (Co-)Organisation of 5 Conferences for health care professionals
• Set up of an series of educational Online Seminars
• Set up of the Nursing forum for EB care (initiated by nurses from our network)
• Gathering contact data of 127 health care professionals working with EB in 65 countries
• Individual training for international health care professionals at the EB House in Austria
„Working together we go further”
Medical Director DEBRA Chile | EB-CLINET Partner since 2012
„I recently joined as an EB-CLINET partner after attending the international congress in London 2020. Being there, I experienced first-hand how important networking is. How sharing knowledge can help this very extraordinary group of patients. We have our own habits and experience, but being open-minded to what others have realized or what has not worked in the past, can only be beneficiary. We hope to share some of our own experiences in the future.”
Pediatric Palliative Nurse - Specialist EB Nurse, EB-Team, University Hospital Leuven | EB-CLINET Partner since 2021