Our Research and Partnerships Officer Charlotte Campbell attended the RDCN meeting in Berlin between November 29th and December 1st 2023. This meeting brought together myasthenia gravis (MG) patient groups across Europe and America with specialist healthcare professionals to discuss how best MG can be treated going forward.

The Rare Disease Connect Neurology meeting is an annual event organised by UCB. It encourages collaboration between all involved parties in myasthenia gravis (MG) and helps promote the patient voice. Myaware have been engaging with the RDCN group through monthly meetings with MG patient groups from France, Spain, Romania, and more, including the USA. By gaining insight into how other patient groups work across the globe, myaware have found avenues for collaboration and insight into the best way we can help our members.

The meeting for patient groups began on the 29th of November and a round table discussion was held where each representative could discuss projects, concerns, and invitations for collaboration with each other. At this meeting, language was not a barrier as translation software had been organised for everyone. It was a fantastic experience to be able to hear from such a diverse group in their native language and be able to respond in kind. Representatives from the Young Patients’ Council, the European Association of Myasthenia Gravis Patients’ Associations (EuMGA), and the Myasthenia Gravis Foundation of America (MGFA) presented on their recent work and future aims. As a patient organisation, myaware are keen to collaborate and build strong links with these groups. We firmly believe we can learn and work together for the benefit of myasthenia patients across the globe.

The second day of the meeting saw the arrival of many healthcare professionals in myasthenia from Europe, the UK, the USA, and Japan. Vivienne Parry, OBE, was a wonderful host and made everyone feel welcome. For those unaware, Vivienne is the Head of Engagement at Genomics England and played a crucial role in ensuring that patient groups are engaged by external companies who develop treatments.

The session involved scientific presentations for the clinicians and interactive conversations between MG patients and neurologists, with discussions including diagnostic hurdles and comparisons in data collection across MG registries.

The final day involved a keynote lecture on why patients belong at the centre of care, delivered by Mr Cormac Kelly, an orthopaedic surgeon with MG. Several representatives of patient groups also presented their artistic depictions of living with MG and described how art can capture their disease better than words. Finally, all attendees took part in a shared workshop. Six breakout groups discussed ways in which history taking, management according to clinical guidelines, symptom reporting during clinical appointments, informed shared decision making, experience sharing, and support networks at diagnosis could be improved in MG. These groups contained a mixture of patients and healthcare professionals to allow for an open and honest discussion on how these topics can improve going forward.

This meeting was a fantastic opportunity to meet many patient organisation representatives, many of them patients themselves, face-to-face after many months meeting online. It was also very encouraging to see the number of healthcare professionals present who actively engaged with patient groups and keen to learn how best they can treat their patients with MG.

Read more about myaware’s awareness campaigns

Myaware will be looking to connect further with the EuMGA, Young Patient’s Council, and the MGFA to bridge the gaps between our communities and work together to raise global awareness of myasthenia. If you would like to connect with these groups, please contact Charlotte Campbell.