The conference is being organised by a collaboration between Maastricht University, LAMA2-Europe, and İstanbul Nişantaşı University in Istanbul. Maastricht University and LAMA2-Europe previously worked together to hold the first international LAMA2 conference in Maastricht, the Netherlands, in 2019, and a second, larger conference called ‘Paving the Road to Therapy’ in Barcelona in 2023.

Maastricht University, led by Professor Bert Smeets, a top expert in LAMA2 research, is in charge of the scientific program. LAMA2-Europe, represented by Bram Verbrugge, the father of a child with LAMA2, will involve its wide network of patients and families in the event. İstanbul Nişantaşı University, led by Professor Haluk Topaloğlu, who was one of the discoverers of LAMA2MD as a separate disease, is to connect with the large, previously underrepresented local community of researchers and patients.

Organizers

  • Bram Verbrugge is a former journalist, founder of Voor Sara Foundation, and initiator of the European collaboration LAMA2 Europe. As the father of a daughter with the rare muscle disease LAMA2-MD, he is passionately committed to raising awareness, improving care, and advancing scientific research for this severe condition.

    Under his leadership, Voor Sara has grown into an international patient organization that co-hosted two major scientific conferences with Maastricht University. Through LAMA2 Europe, he connects patient organizations across countries and builds a strong European network by sharing patient stories, establishing a European patient registry, and involving public figures like kickboxing world champion Rico Verhoeven to help raise awareness.

    Bram not only organizes fundraising events, but also creates meaningful ways to connect families — through gatherings, publications, and clear, up-to-date information on research progress and clinical trials. His mission: a better future for all children and families affected by LAMA2-MD.

  • Bert Smeets, Professor in Clinical Genomics with a focus on Mitochondrial Diseases and key member of these institutes, leads the organization of the scientific programme of the conference alongside a team of Honours Students, just as he did for the meetings in 2019 and 2023.

    Over the past 30 years, he and his research group have discovered hundreds of new muscle disease genes and gene mutations. Unfortunately, he and his team were only able to identify a targeted therapy for two of these, and thus have since moved onto developing autologous muscle-stem-cell therapy with a focus on mitochondrial myopathies, but which is also being tested for LAMA2-RD. In such cases, the genetic defect in the patient's muscle stem cells is corrected, compensated for, or silenced before the cells are re-implanted.

  • Professor Haluk Topaloğlu, is a prominent Turkish pediatric neurologist, who while studying a group of children with what was then known as "Occidental type cerebromuscular dystrophy," in the 1990s, identified LAMA2 as the causative gene.

    Beyond LAMA2, he has contributed to the identification of over 25 novel neuromuscular genetic conditions, and the creation of international guidelines on the diagnosis and management of Guillain-Barré syndrome and chronic inflammatory demyelinating neuropathies.

    He has served as the secretary of the World Muscle Society (2001-2019) and the President of the Gaetano Conte Academy of Myology (2018-2019), and has been awarded with the Hacettepe University Award in Medicine (2002), the TÜBİTAK (Turkish Scientific and Research Council) Medical Research Award (2003) and the Clinical Research Award (2015) from the Gaetano Conte Academy of Myology.

  • "Flap Congress Incorporation," founded in 1993, specializes in planning and organizing events tailored to the needs and preferences of its clients. The company stays informed about the latest developments and trends in the tourism industry, delivering the highest quality services. With its headquarters located in Ankara and a branch office in Istanbul, Flap Tour employs a team of 40 professionals.

Organizations

  • Maastricht University, located on the grounds of an academic hospital, is renowned for its cutting edge research in biomedical sciences, particularly in neuroscience and perinatal medicine within the MHeNs and GROW institutes.

  • We are an alliance of European patient associations representing those affected by LAMA2-Congenital Muscular Dystrophy (LAMA2-CMD), also known as Merosin-Deficient Muscular Dystrophy (MDC1A). 

    Our mission is to further advance awareness and research for LAMA2-CMD internationally and to directly support patients and families by providing relevant information and resources.

    By including the patients and families, and by collaborating with the clinicians, researchers and members of the biotech industry involved with LAMA2-CMD around the world, we aim to accelerate the road to therapy in a truly united and collective global effort.