Rare Disease, NF1 and Primary Care: Research Workshop

Building collaborations to advance rare disease research in primary care

Are you a primary care academic, clinician with an interest in rare diseases, rare-disease researcher, or an industry partner curious about the future of primary care research in rare conditions?

If so, this interactive research development workshop is for you.

This NW RDN NIHR-funded workshop will bring together stakeholders from across primary care, secondary care, academia, patient-focused research, and industry to explore how primary care can better support people living with rare diseases, using neurofibromatosis type 1 (NF1) as an exemplar condition.

The session will explore:
* the role of primary care in early recognition and diagnosis
* diagnostic pathways and longitudinal management
* coordination across services
* opportunities to use routinely collected data and digital health tools to strengthen care

By identifying key evidence gaps and priority research questions, the workshop aims to develop a collaborative, patient-centred research agenda grounded in everyday primary-care practice.

Join us to connect, set research priorities, and shape collaborative studies that improve outcomes for people living with rare diseases.