At the Manchester Rare Conditions Centre (MRCC), we believe that voices of people living with rare conditions should never go unheard. Through collaborations, storytelling, and advocacy, we amplify the voices of patients, families, and professionals to drive systemic change and ensure rare conditions are seen, understood, and prioritised.
We partner with leaders like the Whitworth Group and We R Rare to create accessible resources—including educational videos, podcasts, and blogs—that transform complex medical information into hope and clarity for families. We empower patients and caregivers through regular information days, where clinical expertise is translated into practical tools for daily life. Additionally, we champion policy change by uniting healthcare professionals, policymakers, and patient organizations to advocate for equitable care and research funding.
In line with the UK Rare Disease Framework and priorities of our partners, such as Manchester Foundation Trust’s pledge to put patients at the heart of service design, we have aligned our strategy and identified the following two Engagement & Advocacy focus areas: (1) Advance awareness and advocacy for individuals and families living with RCs; (2) Partner and collaborate with diverse range of organisations.