In september 2023 we started with the LAMA2-MD consortium meetings for researchers, clinicians, companies and patients and their representatives. The meetings are one of the tangible outcomes of the Lama2 conference in Barcelona (march, 2023). The conference was organised by Maastricht University and the Dutch foundation Voor Sara, in cooperation with Lama 2-Europe. The 3-day conference was largely funded by a grant of the European Joint Programme on Rare Diseases.
The Lama2-MD consortium is supported by Lama2 Europe and the US-based CureCMD, but the intention is to reach a global involvement. The meetings have speakers from two different groups, who give in half an hour, updates on their clinical studies or therapeutic research (20 minutes presentation + 10 minutes discussion). This can be followed, if applicable, by ad-hoc presentations, questions, sharing of successes/failures or reflections by any of the participants for a maximum of half an hour.
By attending, all participants agree that the information they heard during the meeting is confidential and that no data will be distributed outside the group of participants without approval of the presenting group. A formal consortium agreement will be circulated shortly among the professional participants to cover not only the confidentiality, but also to enable safe exchange of samples and biomaterials within the consortium. The meetings are recorded, so that people can look the lectures back. The recordings are stored and can be viewed on a secure part of the LAMA2- website by registered users. Even though patients and their organizations will be able to attend, the presentations are at a scientific level, as the key aim is to move the scientific research on the road to therapy for LAMA2-MD forward.
If you wish to join this consortium, please contact us.