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 […]

MAJOR MEASURES TO PROTECT PEOPLE AT HIGHEST RISK FROM CORONAVIRUS

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 ‚Äď 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 […]

HELP ILLUMINATE THE RARE REALITY

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 […]

Rare Film Festival 2020

All the winners of the Rare Film Festival.

To celebrate Rare Disease Day, earlier this month we hosted the first film festival fully dedicated to raising awareness of rare diseases in the UK. We invited our supporters, including patient organisations, industry partners, communication agencies and individual supporters, to submit short films around the theme of rare diseases. We also liaised with top filmmaking […]

Rare Disease Day 2020

Rare Disease Day is an annual event, recognised by countries around the world that aims to raise awareness about rare diseases, and their impact on patients. Rare Disease UK will be hosting our annual receptions at the Senedd in Cardiff, the House of Commons in London and in the Scottish Parliament in Holyrood. Rare disease […]