Resource Library

Webinars covering diagnosis in children, navigating clinical trials and patient advocacy.

Sessions focused on accessibility, healthcare professional engagement and patient voice.

Resources explaining clinical research participation from a patient perspective.

UK rare disease policy updates, research news and community events.

Information, education and support resources for people affected by porphyria.

Patient support services, educational materials and awareness initiatives.

Support and information for individuals and families affected by Multiple Endocrine Neoplasia conditions.

Training programmes for patient advocates involved in research and medicines development.

Policy updates and legislative advocacy sessions relating to rare diseases.

UK rare disease innovation events and cross-sector collaboration forums.

Updates on rare disease research networks and clinical study collaboration.

Graduating PAG talks, clinical trial navigation webinars, and advocacy resource exchange.

Comprehensive online learning platform, annual events and rare disease video library.

Rare disease education and awareness webinars.

Free courses, webinar recordings, and support group leader training.

Policy updates and legislative advocacy webinars for rare diseases.

Research presented at ECRD 2026 highlights how machine learning could support earlier identification of rare and underdiagnosed diseases in primary care.