Tell Your StoryCommunityResources
My Rare Journey
CollaboratorsContact
Sign InGet Started
Resource Hub

Resource Library

Browse articles, videos, guides, and news curated for the rare disease community.
AllArticleVideoGuideNews
News
Genetic Alliance UK
UK rare disease policy updates, research news and community events.
Genetic Alliance UKJun 15, 2026
View resource
News
Cambridge Rare Disease Network Events
UK rare disease innovation events and cross-sector collaboration forums.
Cambridge Rare Disease NetworkJun 15, 2026
View resource
News
Research Presented at ECRD 2026 Highlights Potential for Earlier Identification of Rare Diseases in Primary Care
Research presented at ECRD 2026 highlights how machine learning could support earlier identification of rare and underdiagnosed diseases in primary care.
OpalMedicaJun 8, 2026
View resource
My Rare Journey
Platform
  • Tell Your Story
  • Community
  • Resources
  • Collaborators
Legal
  • Privacy
  • Terms
  • Contact
Cyber Essentials certified

My Rare Journey by OpalMedica supports the NICE rare diseases quality standard (QS214), promoting earlier detection, coordinated care, and improved outcomes for people living with rare diseases.

Overview | Rare diseases | Quality standards | NICE

© 2026 OpalMedica Ltd. All rights reserved. Registered in England & Wales.

Photography by Graham G Miller. All rights reserved.

Cookie notice

We only use essential cookies to keep the site running, no analytics or tracking. Privacy policy