Citizen Science and Public Engagement
Shaping Health Data Research Together
The HEREDITARY project aims to bring the world of research closer to non-experts. For this reason, the project follows a Citizen Science approach, seeking to create spaces for meaningful dialogue between clinicians, researchers, patients, and associations.
In the field of mental health (and particularly in the context of neurodegenerative diseases), building stronger connections between scientific research and civil society is a recognised priority for the European Union. HEREDITARY contributes to this goal by promoting transparency, inclusion, and shared knowledge.
Through its Citizen Science and Public Engagement activities, the project is co-creating solutions together with those most directly affected, ensuring that their needs, perspectives and experiences are embedded at the heart of innovation.
Health Social Laboratories
Health Social Laboratories (HSLs) are co-creation spaces where researchers, clinicians, patients, and policymakers collaborate to make HEREDITARY’s research more relevant, ethical, and impactful for society. Click on the image below to access an infographic about them!
Be part of our research: a socio-demographic survey
We want to understand better how people access, interpret, and use health information in their daily lives. Through the Health Literacy and Access to Health Information Survey and Questionnaire, we will identify gaps and barriers that affect health literacy across populations. These insights will help us design more inclusive, accessible, and patient-centred communication tools to support HEREDITARY research and outcomes. Coming soon!
Public Engagement Initiatives
Interview with prof. Dolores Ayala Velázquez: communication challenges in neurodegenerative diseases
This latest edition of the full interview with Dolores Ayala, in which she previously discussed her personal experience of living with Progressive Bulbar Palsy (PBP), and how technology and care affect disease management, highlight the importance of patient voices in...
Interview with prof. Dolores Ayala Velázquez: technology and care in neurodegenerative diseases from a patient’s perspective
As part of HEREDITARY’s commitment to citizen participation, OBSERVA conducted this interview to explore how people living with neurodegenerative diseases experience care and technology in their daily lives, under Work Package 6 activities. In this second part of a...
Interview with prof. Dolores Ayala Velázquez: living with Progressive Bulbar Palsy (PBP)
This interview was conducted by OBSERVA, a partner in the HEREDITARY consortium, as part of its efforts to promote citizen engagement and give visibility to the voices of people living with neurodegenerative diseases. In this first part of a three-part full interview,...
HEREDITARY releases “World Café Outcome: Priorities and Gaps” Report
HEREDITARY's 'World Café Outcome: Priorities and Gaps' report was released. The report captures key insights from a dynamic World Café session held on October 16, 2025, during EBC's Brain Innovation Days. Diverse stakeholders, including researchers, healthcare...
HEREDITARY Project showcases innovation at RIES Forum and Brain Innovation Days
On 15-16 October 2025, the HEREDITARY Project took part in two major European health innovation events: the X RIES Forum in Galicia, Spain, and the 5th Brain Innovation Days in Brussels, Belgium.