ERDERA launches patient survey on rare disease research involvement

The European Rare Disease Research Alliance (ERDERA) is putting patient perspectives front and center with the launch of a new online survey aimed at understanding how rare disease patient organisations experience their involvement in publicly funded research.

This initiative, led by ERDERA’s patient-engagement working group, is an opportunity for patient groups to shape the future of research projects that directly affect their communities. The survey will remain open for six to eight weeks, giving organisations across Europe time to contribute their insights.

What is the aim of the survey?

In rare disease research, patients and caregivers bring a depth of knowledge that goes far beyond the clinical. They live with the condition every day and often become highly informed about treatment options, care pathways, and research needs. When included meaningfully in research, their insights can guide study design, improve relevance, and ensure that results truly matter to those affected.

“Their perspectives are vital in shaping, refining, and even redefining research projects,” says Roseline Favresse, who leads ERDERA’s work on education and training in rare disease research. “This survey aims to collect feedback from patient organisations about their engagement—what works well, and what could be improved.”

What does the survey covers?

The survey explores a wide range of experiences, including:

• When and how patient groups are brought into research projects
• The clarity of communication throughout a project’s lifecycle
• Whether input from patient advocates is genuinely considered in project design
• Experiences with past EU-funded initiatives like EJP RD and E-Rare

These insights will help identify best practices and highlight gaps in engagement—such as whether patients are involved from the start or only brought in after a project has been funded.

All responses will be treated with strict confidentiality under GDPR and data protection regulations. Once anonymised, the data will be analyzed to identify trends and patterns. No individual or organisation will be identifiable in the final results.

What will happen with the results?

Plain-language summaries of the survey results will be shared publicly with:

• Research funders and policy makers
• Academic teams applying for future funding
• Patient organisations across Europe

These findings will help refine ERDERA’s guidance ahead of future calls for proposals ensuring that patient involvement is not just encouraged but integrated as standard practice.

Where can you access the survey?

You can take part in the survey by clicking here. It takes just a few minutes, and your input could help shape the way rare disease research is conducted across Europe in the coming years.