Implementation of the UK Rare Diseases Framework

A young man in a red jumper, sat in an audience, talking into a microphone as others listened.

Patient Empowerment Group Following the publication of the UK Rare Diseases Framework, Rare Disease UK’s Patient Empowerment Group (PEG) has held a number of meetings to discuss the four priorities and five underpinning themes of the Framework. Below is a short summary of each meeting: Diagnosis: 19 May 2021 The topic of discussions for this […]

UK Rare Diseases Framework

Patient voice opportunities The Department of Health and Social Care are recruiting for voices of people living with rare condition to influence the delivery of the UK Rare Diseases Framework. Roles for recruitment There is a place on the UK Rare Diseases Framework Board, which will provide oversight and coordination of rare disease policy and […]

Scotland’s Rare Disease – Final Progress Report

Rare Disease Scotland - Final Progress Report

Ahead of Rare Disease Day 2021, the Scottish Government published their Final Progress Report, which evaluates how Scotland has improved against the 51 commitments outlined in the 2013 UK Strategy for Rare Diseases.  2013 UK Strategy for Rare Diseases Themes The 51 commitments outlined in the 2013 strategy covered five themes: Empowering those affected by […]

Star in the Rare Disease Day 2021 video!

Rare is strong. Rare is many. Rare is proud. This year we want to feature as much of the UK’s rare community as possible in our video so we need you to send us your footage – moments of joy, tears, frustration and everything in between.  WHO CAN SUBMIT Anyone in the UK living with […]

Our thoughts on the UK Rare Diseases Framework

Nick Meade

We welcome the publication of the UK Rare Diseases Framework and look forward to working with the four nations of the UK to help to deliver its aims. This is once again an almost unique piece of health policy in that it represents a commitment from four health ministers from across the UK to deliver […]


GAUK at parliamentary meeting

We have moved the information that was previously hosted on this page to our Covid-19 information hub. There, you will be able to find specific information for people with genetic, rare and undiagnosed conditions for England, Wales, Scotland and Northern Ireland.

Rare Disease Day 2020

Rare Disease Day is officially held on the last day of February every year and this year, in 2020, it fell on a very special day – 29 February. To mark Rare Disease Day 2020, Rare Disease UK hosted three receptions that aimed to raise awareness of rare diseases and improve access to care, treatment, […]

Health Awareness – Rare Diseases 2020

Genetic Alliance UK recently worked with Health Awareness on their 2020 Rare Diseases campaign. A printed publication was enclosed within every copy of the Guardian newspaper and the content is available online. The campaign featured exclusive content from key thought leaders and industry voices in the run up to rare disease day 2020, including articles […]

Alert Card Report

At our Westminster reception for Rare Disease Day on Wednesday 26 February, we launched our alert cards report. This report, prepared with the help of Genetic Alliance UK member organisations, Rare Disease UK supporters and clinicians, aims to remind NHS England of its commitment to implement alert cards for rare disease patients, represent the patient […]


This Rare Disease Day we want you to help illuminate the rare reality of what it means to live with a rare condition. Microsite Our microsite is open to everyone and has lots of ways to help you get involved with Rare Disease Day. You can share your story and become a star in the night sky, connect […]