Our work

Rare Disease UK (RDUK) provides a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases.

We work with health departments across the UK to implement the UK Strategy for Rare Diseases to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support. 

All / Coordination of Care / Diagnosis / Patient Empowerment/ Patient Experience / Research

Patient Empowerment Group

Patient Empowerment Group

Patient Empowerment Group

Undiagnosed genetic conditions and the impact of genome sequencing (2016)

Patient Experience

Undiagnosed genetic conditions and the impact of genome sequencing (2016)

Rare Disease Day

Patient Experience

Rare Disease Day

Rare Disease Day 2016

All

Rare Disease Day 2016

Patient Experience Videos

Patient Experience

Patient Experience Videos

The Rare Reality (2016)

Patient Experience

 The Rare Reality (2016)

Rare Disease Day 2015

All

 Rare Disease Day 2015

High commendation at the Communiqué Awards

All

High commendation at the Communiqué Awards

EUROPLAN: UK National Conference Report (2014)

Research

EUROPLAN: UK National Conference Report (2014)

Patient Experiences of Transition Between Care Providers (2014)

Patient Experience

Patient Experiences of Transition Between Care Providers (2014)

Rare Disease Day 2014

All

Rare Disease Day 2014

Centres of Excellence for Rare Diseases (2013)

Coordination of Care

Centres of Excellence for Rare Diseases (2013)

Rare Disease Care Coordination (2013)

Coordination of Care

Rare Disease Care Coordination (2013)

Funding Support for Rare Disease Research (2013)

Research

The Funding Support for Rare Disease Research: Raising Awareness and Increasing Transparency report …

Experiences of Rare Diseases Patients and Families in Wales (2012)

Patient Experience

Experiences of Rare Diseases Patients and Families in Wales (2012)

Experiences of Rare Diseases: Patients and Families in Scotland (2012)

Patient Experience

Experiences of Rare Diseases: Patients and Families in Scotland (2012)

Improving Lives, Optimising Resources (2011)

All

Improving Lives, Optimising Resources (2011)

Experiences of Rare Diseases: An Insight from Patients and Families (2010)

Patient Experience

Experiences of Rare Diseases: An Insight from Patients and Families (2010)

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