In 2023, DEBRA International saw many activities taking place with significant reduction in resources. The reliance on our Executive Committee has therefore been greater than ever, so I would like to thank them all for their time and contribution with mention of our Office Bearers: Vice President, Humphrey Hanley; Treasurer, Zlatko Kopecki; Secretary, Rainer Riedl; Vice Treasurer, Ignacia Fuentes; and Vice Secretary, Jimmy Fearon.
New strategic plan
At the beginning of 2023, the Executive Committee approved DEBRA International’s new three-year strategic plan, which consists of revised vision, mission, and purpose statements as well as brand new goals; one organisational and four charitable activity goals. We have endeavoured to infuse in this strategy our ethos of nothing about us without us and our previous core business areas have now either been transformed into a strategic goal or been grouped as a specific project under the banner of one goal or more. The strategy has allowed us to expand upon existing work streams as well as to devise additional short- and long-term projects under different goals.
Organisational capacity
Our organisational capacity has been significantly enhanced through a new fundraising initiative: the DEBRA International Roundtable of Companies (DIRC). Companies make an unrestricted annual financial contribution to DEBRA International and in turn benefit from interactions with DEBRA International and other companies in a non-competitive environment where participants can address key issues at a strategic level. More information can be found on our website: https://www.debra-international.org/roundtable-of-companies. The initial DIRC includes two platinum partners, Chiesi Global Rare Diseases (formally Amryt Pharma), and URGO Medical; and one gold partner, MedTech Solutions/Ferris Mfg. One bilateral meeting with each partner was held in quarter one, and an in-person group meeting was held in London, UK in December 2023. Our DIRC partners were also invited to participate in the DEBRA International and GlobalSkin Symposium in Singapore as part of the World Congress of Dermatology in July 2023. We will continue to engage with our partners and grow the DIRC with more members in the forthcoming months and years.
In 2023, we also focused on disseminating information about our organisation through our channels of communication, such as newsletters. In 2024, we plan to broaden this by further enhancing communication through social media content, updating our website, and sending out more frequent reports on our activities. We also hope to continue to translate materials that are valuable and relevant to our membership into different languages for wider reach.
In terms of human resource management, DEBRA International was set up as an employer in the UK earlier in 2023 after management had been previously handled by DEBRA UK. This move affords DEBRA International greater independence and the opportunity to hire its own staff. At the end of 2023, DEBRA International increased its resource capabilities with the hiring of Megan Foster Flaherty as DEBRA International’s new part-time Operations and Communications Coordinator. Megan is based in the UK and is no stranger to the charity or rare disease world. She has already become an intrinsic part of the organisation, and we are delighted to have her on board. In 2024, DEBRA International looks to further increase its workforce by hiring a part-time clinical practice guidelines coordinator. We were very sad to see Kattya Mayre-Chilton vacate this role earlier in 2023 and thank her for her dedication for the past 7 years.
In 2024, we will continue to foster best practises and develop operational policies for all areas of the organisation under the guidance of subcommittees, including internal auditing, governance and nominations, and finance committees.
DEBRA International has recently acquired a subscription to an artificial intelligence generated simultaneous translation tool called Wordly, which we plan to use for future annual general assembly meetings, webinars, and other member-facing events for greater inclusion allowing members to access the contents of our meetings in the languages that they prefer.
Membership capacity building
DEBRA International continues to provide operational support to its members by sharing licences, such as for Zoom and Microsoft 365. Collecting and sharing information on member activities as well as mentoring and supporting younger, developing groups to become full-fledged members remained a key activity in 2023 and will continue into 2024. We have continued to support DEBRA Ukraine throughout the first half of 2023 to ensure vital medical supplies reach EB patients and families. We are happy to say that all requirements have been met thus far although we shall remain in a position to respond to requests for help should the need arise. Through DEBRA International, support has been made available to EB patients as well as those of other rare diseases in Turkey and Syria after the 2023 earthquake. We will continue to focus our endeavour to help displaced families, particularly in areas of conflict or natural disaster and are proud that DEBRA International has continued in its small way to make an impact on not only EB organisations but other rare disease associations globally. We are currently supporting DEBRA Belarus and actively engaged in sourcing and ensuring that access to EB specialist dressings remain possible following sanctions imposed on the country.
With the assistance of DEBRA Spain, we are also supporting a group of patients and advocates in Peru to register a DEBRA there and we hope that they'll be able to join us in 2024. In 2023, we welcome Association Epidermolysis Bullosa (AEB) Bulgaria as a full member of DEBRA International. DEBRA Bulgaria had been disbanded, and some of the original members have created this new functioning group, so we are delighted to see them back with us.
Finally, we are very pleased to share that a small group of young DEBRA/EB members are creating the DEBRA International Youth Council. The Youth Council will be run by a core team of 11 leaders from all around the world, including from the USA, Canada, Brazil, Chile, Austria, Norway, South Africa, India, Singapore, and Australia. We hope that the Youth Council will not only strengthen our global community but forge pathways for Youth Council Leaders, Ambassadors, and Mentors to become the future leaders of DEBRA and DEBRA International.
DEBRA International continues to support the organisation of the next Congress that will take place in Cairo, Egypt in April 2024. Congress registration and abstract submission opened on the 1st December 2023. The Congress’s dedicated website can be found here: www.ebcongress2024.org where all updates on registration, social events, the programme, and security are provided.
2024 will also see the relaunch of grants that were offered prior to the COVID-19 pandemic. These grants will be made available for specific activities and projects amongst our members.
We will continue to create a shared resource and communications hub for members to communicate and provide a forum to exchange learning ideas and insights.
We also plan to relaunch the annual Membership Profile survey that allows us to show the impact of our DEBRA groups’ work worldwide.
EducationÂ
In 2023, we continued the development of clinical practice guidelines, which have since been slowed due to Kattya's departure. There are currently 5 CPGs in development newest being eye care, neonatal, enteral and parenteral feeding, oesophageal dilatation, CAIMs. We are pleased to announce that in 2023, the Consensus-based guidelines for the provision of palliative and end-of-life care for people living with EB was published. In 2024, we will be submitting the new clinical practice guideline on neonatal care in epidermolysis bullosa for publication. We are currently working on patient guides for oral health care; pregnancy, childbirth and aftercare; management of anaemia; and palliative care with the aim of translating these into as many languages as possible.
We also hope to relaunch grants that will facilitate access to EB training and professional development opportunities for junior healthcare professionals, medical students, and junior researchers.
We plan to create educational video content on different topics of EB healthcare and the CPGs using Wordly.
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Research
DEBRA International has continued to be the primary patient organisation partner for the EU-funded Changes in the Socio-economic Burden of Epidermolysis Bullosa in Europe project (www.bur-eb.com). This study seeks to estimate the socioeconomic burden of EB in seven EU countries, Spain, France, Germany, Italy, Hungary, Austria, and Bulgaria. The expectation is that the findings of this study will be compared to that of a similar study for which data was collected 10 years ago.
We also hope to establish a Scientific Advisory Board to advise on latest trends in care and treatment for EB.
AdvocacyÂ
In 2023, we continued to be the international voice of people with EB at many international events that were centered on dermatology. Highlights include participating in the 2nd Hong Kong Epidermolysis Bullosa Meeting (Hong Kong, February 2023), EWMA 2023 (Milan, Italy, May 2023), the MENA Congress for Rare Diseases (Abu Dhabi, UAE, May 2023), GlobalSkin ELEVATE 2023 Conference (Brussels, Belgium, June 2023), DEBRA International and GlobalSkin Symposium (Singapore, July 2023), and the World Congress of Dermatology (Singapore, July 2023).
In 2024, we will be participating in the EB Congress (Cairo, Egypt, April 2024), EWMA 2024 (London, UK, May 2024), the World Congress of Rare Diseases (Paris, France, June 2024), and the ESDR meeting (Lisbon, Portugal, September 2024). For the first time, we will develop an awareness campaign for all members to use for EB International Awareness Week 2024.