General Assembly 2025

On January 13th, 2025, we held our second CureQ General Assembly, this time in Leiden at PLNT. It was a packed afternoon full of updates, discussions, and energy. A great way to kick off the new year together!

This was a moment to bring everyone in CureQ back together — researchers, clinicians, partners, patient organisations, and funders — to look back on what we achieved in our second year (2024), and to get inspired for the next phase. It was also our second meeting with the Advisory Board, where we had the chance to present our progress and receive their valuable feedback.

The program included presentations from the different work packages, discussions about social media and outreach, and parallel sessions with both the Advisory Board and research teams. We ended the day with a well-earned borrel.

Accomplishments

Thanks to the strong collaboration between teams, we’ve made some real progress:

  • Initiated the first isogenic cell lines to model Huntington’s Disease, SCA1 and SCA3
  • Set up and optimised a range of automated assays, generating large datasets.
  • Aligned protocols and expertise across laboratories, ensuring everyone works with the same tools.Regular WP meetings and workshops have ensured harmonisation of culture conditions, assay protocols, and readouts.
  • Recruited new mutation/gene carriers and expanded our patient cohorts and biobanks
  • Designed and launched new teaching programs at applied universities
  • Made significant progress on the ethical aspects of our work which were published on Eur J Hum Genet: Predicting age of onset and progression of disease in late-onset genetic neurodegenerative diseases: An ethics review and research agenda – PubMed
  • Developed AI-based models and implemented FAIR data management strategies

All these steps bring us closer to our main goals: understanding and predicting disease onset and severity, and finding better treatment strategies.

The Advisory Board once again pointed out what makes CureQ special: it brings together all major HD and SCA efforts in the Netherlands, across disciplines, across ages, across types of institutions.