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100 YEARS OF METACHROMATIC LEUKODYSTROPHY: FROM DISCOVERY TO CURE


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Subject:

Invitation to the “100 Years of Metachromatic Leukodystrophy” Symposium – 14–15 November 2025


Dear Colleagues,

We are delighted to invite you to our international symposium “100 Years of Metachromatic Leukodystrophy: From Discovery to Cure”,

taking place on 14–15 November 2025 in Tübingen, Germany.

This special event will commemorate a century since the first description of MLD in Tübingen, bringing together experts from across Europe to discuss past achievements, current management strategies, and future perspectives, including newborn screening and gene therapy.


Prof. Dr. Samuel Gröschel,

Prof. Dr Hendrick Rosewich



Dates and preliminary Program


14 November 2025 | 14:00–18:45Scientific 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 | 09:00–12:30Parallel 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



Registration 

Please register by 30th Sept 2025 using this link: https://eveeno.com/182090309. Participation is free but spaces are limited.



Accommodation

A limited number of rooms are reserved in nearby hotels (see list below). Please book early!



Contact

Please feel free to contact us: 100yearsMLD@med.uni-tuebingen.de  


We look forward to welcoming you to Tübingen for this important gathering to shape the future of MLD care and research.


Hotel Krone Tübingen
Uhlandstr. 1, 72072 Tübingen
Tel: +49 7071 1331-0 | Email: reservierung@krone-tuebingen.de

  • Double Room: €206 / night

  • Includes breakfast buffet, spa & fitness access, Wi-Fi, VAT

  • Parking: €20/night (cannot be reserved)

  • Book by email mentioning “Kinderklinik Frau Steinhilber”



GIZ Tübingen
Hoppe-Seyler-Str. 6, 72076 Tübingen
Tel: +49 7071 4101-0 | Email: info@gzt-tuebingen.de

  • Double Room: €137 / night

  • Single Use: €132 / night

  • Single Room: €114 / night

  • Breakfast: €14 / person / night (optional)

  • Book with keyword: “100 years MLD”



Hotel Domizil Tübingen
Wöhrdstr. 5–9, 72072 Tübingen
Tel: +49 7071 139-0 | Email: info@hotel-domizil.de

  • Double Room: €184 / night

  • Single Use: €148 / night

  • Includes breakfast

  • Room block available until 26 Sept 2025

  • Book with keyword: “100 years MLD”


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