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The European voice for informal carers

Genes4All: Enhancing Genetic Knowledge Together

The past months have been among the most active in the Genes4All project. We completed our pilot testing phase, gathered feedback from 25 participants across five countries, held our 3rd Transnational Project Meeting in Heidelberg, and are now channelling everything we learned into making our tools better.

Serious Game pilots: what we heard from end-users

In September 2025, our consortium completed the pilot testing phase of the Genes4All Serious Game across the participating countries. A total of 25 participants — 10 healthcare professionals and 15 family members or caregivers of people with neurodegenerative disorders — played the game and gave us detailed feedback.

The overall response was positive. Participants found the game educational and valued how it makes complex genetic concepts accessible and understandable. The graphics were considered engaging and motivating. At the same time, the feedback gave us a clear list of improvements to work on and make it more accessible to a wider audience.

The GCSDM Guide is coming together

Alongside the game, we are developing the Genetic Counselling Service Delivery Model (GCSDM), a digital guide for healthcare professionals on how to deliver structured, person-centred genetic counselling sessions with families affected by neurodegenerative disorders, including the use of serious games.

The guide covers the full arc of the counselling process: from background on genetic testing and existing protocols to how to integrate the Genes4All Serious Game and online platform into sessions to the ethical and GDPR considerations that arise in this context. It also includes consent forms and a glossary of key terms. Feedback from the partners is being incorporated directly into the relevant sections.

Once finalized, the GCSDM Guide will be published in English, Greek, Spanish, German, Turkish, and Danish, making it usable across all partner countries and beyond.

 

WP4: a new line of work

Development of the online Genes4All tool has started!

Our consortium gathered on 12–13 March 2026 at the University Hospital of Heidelberg for an in-person meeting, hosted by our German partners. This meeting allowed the consortium to make decisions together and align on different and important new tasks coming our way; like the materials for the online tool.

 

With this, the third pillar of the project is now underway. The Genes4All online platform will be an open educational tool that will offer resources, practical tips, and decision-support materials for families and individuals who have undergone genetic testing, those who are thinking about it, or people that have a higher risk for neurodegenerative diseases.

The platform will help people answer questions that come after a test: “What does this result mean?” “Are there any preventive measures that can be taken to reduce my risk or the risk of my children?” “Where can I find support?” “How do I talk to my family about this?”. It will also be a resource for healthcare professionals in their daily practice and relatives of people affected by a neurodegenerative disease that might also need certain support.

The Heidelberg meeting included a co-creation session on the tool’s content and structure, bringing in perspectives from genetic counsellors, neurologists, and patient advocates across the consortium. Follow us closely to know the future developments!

 

Stay tuned!

www.genes4all.com

  • LinkedIn: Genes4All
  • Twitter: @Genes4all_EU
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