Office for Rare Conditions

The Office for Rare Conditions is dedicated to placing patients at the heart of everything we do. We provide information, guidance, and support to individuals and families affected by rare and undiagnosed conditions.

Our goal is to empower patients and families by promoting self-management and supporting their ability to take an active role in their health and well-being.

To achieve this, we:

Provide clear, accessible information and resources.
Connect individuals with rare conditions to support networks and peer communities.
Signpost to specialist organisations and services that can offer further assistance.
Strengthen collaboration between patient support groups, amplifying their collective voice.

We also work closely with healthcare professionals, supporting clinical teams in delivering patient information events and organising education sessions for professionals, ensuring better awareness and understanding of rare conditions.