PSC Support Signs Landmark European Declaration to Accelerate Rare Disease Innovation
PSC Support Signs Landmark European Declaration to Accelerate Rare Disease Innovation
PSC Support Signs Landmark European Declaration to Accelerate Rare Disease Innovation
Joining European Reference Networks and global leaders to transform the rare disease care ecosystem in the UK and EU.
What is the European Innovation and Care Ecosystem Declaration?
The Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases is a strategic roadmap developed to address the persistent fragmentation in rare disease diagnosis, care, and research across Europe. It was created in response to urgent unmet needs and is supported by a multi-stakeholder collaboration including European Reference Networks (ERNs).
Why is this declaration important for the PSC community?
For people living with primary sclerosing cholangitis (PSC), this declaration is a vital step toward reducing the average five-year delay in rare disease diagnosis. By fostering scientific excellence and cross-border collaboration, the initiative aims to improve the lives of the 30–36 million people in the EU living with rare conditions, including those in our own community.
How will this affect patients in the UK and the EU?
The declaration calls for a ‘whole-of-society’ approach to overcome information gaps and improve access to innovative medicines, which currently take an average of 578 days to reach patients after approval. While the UK has recently simplified its own regulatory environment, this European alignment is essential for cross-border research and ensuring that patients in both the UK and EU are the first beneficiaries of breakthrough treatments.
Read PSC Support’s Research Strategy
What are the key goals for future rare disease care?
The roadmap prioritises several critical areas for improvement:
- Sustainable Funding: Moving away from short-term, project-based funding toward long-term support for biomedical research.
- Data Harmonisation: Addressing gaps in rare disease registries and improving the sharing of high-quality data across borders.
- Access to Innovation: Streamlining regulatory procedures to prevent the decline of clinical trials within Europe.
- Patient Involvement: Formally including patient representatives and advocates in the decision-making process for therapy development.
Turning Ambition into Action in 2026:
Our Fortnight in Focus
At PSC Support, we want a world without PSC. We work tirelessly behind the scenes to drive research and improve lives. Here is a snapshot of what we've been up to:
Building Partnerships: We planned our attendance at major liver and gastro events this year to ensure healthcare professionals know about PSC and the guidelines around it.
Empowering our Community: We published our monthly research roundup to keep the community informed about research progress and advocacy news.
Improving Care: We collaborated with partners to develop a standardised care pathway, aiming for consistent care for everyone with PSC.
Organisational Excellence: We discussed how to show our appreciation to our donors in a more personal way.
Organisational Excellence: We provided research impact data to the Association of Medical Research Charities to maintain our high standards of transparency in research.
Organisational Excellence: We strengthened our data management systems to better track the impact of the research projects we fund.
Organisational Excellence: We signed off our budget for 26/27 to ensure we have proper and critical oversight of our spending.
Progressing Research: We updated the Asp-PSC clinical trial sites to ensure PSC patients are up to date on where they can go to take part in the trial and we held a webinar all about it!