twitter facebook email
"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK

Latest Partners

Living with Lowes

HLRCC Family Alliance

LAM Action

Living Beyond a Diagnosis

Cystinosis Foundation UK

MLD Foundation

CDKL5 UK

Ben's Friends

Kirsty's Cause

Bone Cancer Research Trust

PVNH Support & Awareness

PID UK

You are here: Home / About RDUK / Background

Background to RDUK

RDUK was established by Genetic Alliance UK, the national charity of over 160 patient organisations supporting all those affected by genetic conditions, in conjunction with other key stakeholders in November 2008 following the European Commission’s Communication on Rare Diseases: Europe’s Challenges.

This Communication set out proposals for a comprehensive, European Union (EU) wide, integrated strategy to support Member States on issues including diagnosis, treatment and care for rare disease patients.

RDUK was developed in response to the unmet healthcare needs of the millions of people living with a rare disease and who currently struggle to get access to integrated care and support from the NHS.

In June 2009 RDUK successfully campaigned for the UK’s adoption of the Council of the European Union’s Recommendation on an action in the field of rare diseases. This recommendation calls on all EU member states to develop plans or strategies for rare diseases by 2013 in order to ensure universal access to high quality care.