MetabERN Board Meeting 2024: updates from Budapest

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MetabERN recently hosted its annual three-day board meeting in the beautiful city of Budapest. This successful event brought together approximately 100 participants, including our dedicated IMD experts, patients, and patient representatives. During the meeting, we reflected on our past achievements, celebrating the milestones reached in our mission while also strategising for the challenges and opportunities ahead.

We extend our heartfelt gratitude to all the speakers who shared their insights and expertise, as well as to the dedicated attendees whose active participation and engagement were invaluable to the meeting’s success. The gathering served as a dynamic platform for collaborative discussions and innovation, setting the tone for next year’s board meeting.

So, what inspiring topics were discussed during this year’s board meeting, and who played a vital role? Let’s start from the beginning.

27^th November – Accomplishments and future plans

The first day of the meeting marked a successful launch of MetabERN Board Meeting. We had the chance to meet with local authorities such as Gábor Pogány and Judit Bidló, respectively the head of the HUFERDIS and deputy state secretary, that welcomed us in the magnificent location of Ensana Thermal Margitsziget Hotel, situated on Margaret Island in the heart of the Danube.

The speakers highlighted the importance of collaboration and cooperation in rare disease care, wishing for continued collaboration and work towards better treatment for rare disease patients. Furthermore, we were warmly greeted by our MetabERN colleagues, István Balogh and György Pflieger, who extended their best wishes for a successful event.

The first part of the meeting was dedicated to the discussion on MetabERN accomplishments and future plans, while also giving space to patient group “Think Ammonia!” campaign (presented by Jonathan Gibson from Metabolic Support UK) and to Nataliia Samonenko and Natalia Olkhovych, reporting on the current situation of Ukrainian patients and on how to address their needs.

In the second half of the afternoon, it was time to present the current situation regarding core projects within the network, in particular U-IMD registry, emergency protocol tool and future developments, and MetabERN NBS programme. Finally, we had some updates on guidelines and decision-making tools.

At the conclusion of the event, the Patient Board conducted a hybrid meeting. During the meeting, members of the Board exchanged ideas, shared insights, and brainstormed initiatives aimed at enhancing resources for patients.

28^th November – Joint Actions and collaborative projects

The primary focus of the day was on Joint Actions and collaborative projects, recognizing their critical importance in addressing the challenges faced by rare disease patients and their family. Additionally, we included an update on the valuable work being done in Knowledge Generation Working Group and in MetabERN Education & Training programme, both allowing the development and delivery of high-quality educational resources for healthcare professional and researchers.

The meeting also featured an exciting preview of the OIMD website and of the upcoming new MetabERN website. These two platforms promise to be valuable resources for patients, families, and healthcare providers, offering user-friendly access to information on IMDs and MetabERN activities.

Then, we had the pleasure of having virtual guests join us, sparking brilliant discussions on a number of impactful projects. These included the Joint Action for the Integration of ERNs into National Healthcare Systems (JARDIN), Pluto, RealiseD, European Rare Disease Research Coordination and Support Action consortium (ERICA), Together for Rare Diseases, Casa dos Raros, and Rare Diseases International with a particular focus on its collaboration with the World Health Organization (WHO).

We really need to thank Birute Tumiene, Diego Ardigò, Ralf-Dieter Hilgers, Mari Murel, Sheela Upadhyaya, Chiuhui Mary Wang and Roberto Giugliani for accepting our invitation and for sharing such inspiring presentations of their work. Their insights significantly enriched the discussions and provided valuable perspectives on the current landscape of rare disease research and care, all of them bringing perfect examples on how cooperation is the key to success in IMDs field.

After a long and productive day of sessions, we have been surprised in the dining hall with a captivating performance by a Hungarian string quartet. We express our gratitude to Istvan Balogh and György Pfliegler for this wonderful surprise and for their invaluable assistance in organizing the meeting.

29^TH November – Scientific day dedicated to the subnetworks

The final day of the meeting was dedicated to MetabERN subnetworks (SNWs), where each of them had the chance to present updates on their ongoing activities and achievements. The session had a really positive outcome, as a strong consensus emerged regarding the importance of knowledge sharing and cross-SNW collaboration. It became evident that many activities, typically undertaken by individual SNWs, could be also relevant to other subnetworks. 

This realisation showed the potential of sharing resources and best practices among the different subnetworks, ultimately improving the results of the entire network.

To conclude these three days of intense discussions, MetabERN Coordinator (Maurizio Scarpa) proposed to meet each other again in one year’s time for the next Board meeting!