Dear MLD families and patient representatives,
On behalf of the University Hospital of Tübingen, we are delighted to invite you to the international symposium
“100 Years of Metachromatic Leukodystrophy: From Discovery to Cure,”
which will take place on November 14 and 15, 2025, in Tübingen, Germany.
This special event will bring together doctors, scientists, and other experts from across Europe to celebrate 100 years of research and care in MLD—and, above all, to discuss how we can shape the future of diagnostics, therapy, and care together.
Your perspective is central to this!
We not only invite you to participate, but would also be delighted if you could actively contribute – especially in the workshop on the MLD patient journey on the second day of the event. Together, we want to better understand the challenges, needs, and experiences of people affected by MLD and develop solutions.
Important: the symposium will be held exclusively in English
Interested? Please register at:
https://eveeno.com/182090309
Information on accommodation options can be found during the registration process.
Dates and preliminary Program
Dear MLD families and patient representatives,
On behalf of the University Hospital of Tübingen, we are delighted to invite you to the international symposium
“100 Years of Metachromatic Leukodystrophy: From Discovery to Cure,”
which will take place on November 14 and 15, 2025, in Tübingen, Germany.
This special event will bring together doctors, scientists, and other experts from across Europe to celebrate 100 years of research and care in MLD—and, above all, to discuss how we can shape the future of diagnostics, therapy, and care together.
Your perspective is central to this!
We not only invite you to participate, but would also be delighted if you could actively contribute – especially in the workshop on the MLD patient journey on the second day of the event. Together, we want to better understand the challenges, needs, and experiences of people affected by MLD and develop solutions.
Important: the symposium will be held exclusively in English
Interested? Please register at:
https://eveeno.com/182090309
Information on accommodation options can be found during the registration process.
Dates and preliminary Program
14 November 2025 | 14:00–18:45 – Scientific Talks and Discussion
- Session I: A Century of Progress in MLD
-
- Ingeborg Krägeloh-Mann – Milestones in MLD Research
- Nicole Wolf – Understanding the Disease: Pathomechanisms and Histology
- Les Martin, Michael Scholz, Hanka Dekker – Patient Perspective: Caring and Advocacy
- Carola Reinhard, Marije Asbreuk – Collaboration on MLD: ERN-RND and MLD Initiative
- Session II: Transforming MLD Care: From Trials to Comprehensive Management
-
- Francesca Fumagalli – Advancing Therapies
- Caroline Sevin – Hematopoietic Stem Cell Transplantation in MLD
- Simon Jones – Future Directions in the Treatment of Lysosomal Disorders
- Laura Adang – Patient-Centric Trial Design
- Annemieke Buizer – Disease Management in Advanced MLD
- Session III: MLD Across the Lifespan: Diagnosis, Monitoring, and Biomarkers
-
- Christiane Kehrer – Survival in MLD: End-of-Life Care
- Lucia Laugwitz, Xinying Hong – Biomarkers and Early Diagnosis: Newborn Screening and Prediction
- Pascal Martin – MRI for Disease Monitoring
- Shanice Beerepoot – Assessing Peripheral Neuropathy
- Fanny Mochel – Adult-Onset MLD: Clinical Challenges
From 19:15 – Dinner and Social Gathering
15 November 2025 | 09:00–12:30 – Parallel Workshops
Workshop 1: The MLD Patient Journey (including MLD families and ELA)
- Understand key phases of the patient journey
- Identify unmet needs and psychosocial support structures
- Improve communication and integration of patient perspectives
Workshop 2: MLD Guideline – Diagnosis and Monitoring
- early MRI patterns and clinical clinical signs
- diagnostic algorithms and early biochemical/genetic testing
- Longitudinal disease monitoring: clinical scores, imaging, biomarkers
Workshop 3: MLD Guideline – Management and Treatment
- Coordination of care and family support networks
- Best practices in supportive and palliative care
- Role of HSCT and gene therapy in clinical management
If you have any questions or special requirements, please contact us at:
100yearsMLD@med.uni-tuebingen.de
