LAMA2-CMD consortium meetings
In september 2023 we started the LAMA2-CMD consortium meetings for researchers, clinicians, companies and patients and their representatives. These meetings are one of the tangible outcomes of the Lama2 conference in Barcelona (March, 2023), organised by Maastricht University and the Dutch foundation Voor Sara, in cooperation with Lama 2-Europe and funded by a grant of the European Joint Programme on Rare Diseases. These monthly meetings aim to promote and advance scientific collaboration and research efforts for LAMA2-CMD
The Lama2-CMD consortium is currently organized by prof. Bert Smeets of Maastricht University and the Dutch Voor Sara foundation and supported by Lama2 Europe and the US-based CureCMD foundation. The intention for these meetings is to have the broadest possible international involvement. In each meeting, speakers from two different groups, each provide half-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 terms of confidentiality, but also to enable safe exchange of samples and biomaterials within the consortium. The meetings are recorded, stored and can be viewerd on a private section of the LAMA2 website, accessible to registered users. Even though patients and their organizations are welcome to attend, the focus of the meetings is scientific discussion, as the key aim is to progress scientific research and advance the road to therapy for LAMA2-CMD.
If you wish to join this consortium, or if you want to watch previous presentations, please contact us.
