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Our thoughts on the UK Rare Diseases Framework

Our thoughts on the UK Rare Diseases Framework

Rare Reach Festival 2021

Rare Reach Festival 2021

Star in the Rare Disease Day 2021 video!

Star in the Rare Disease Day 2021 video!

MAJOR MEASURES TO PROTECT PEOPLE AT HIGHEST RISK FROM CORONAVIRUS

MAJOR MEASURES TO PROTECT PEOPLE AT HIGHEST RISK FROM CORONAVIRUS

Rare Disease Day 2020

Rare Disease Day 2020

Health Awareness – Rare Diseases 2020

Health Awareness – Rare Diseases 2020

Alert Card Report

Alert Card Report

HELP ILLUMINATE THE RARE REALITY

HELP ILLUMINATE THE RARE REALITY

Rare Film Festival 2020

Rare Film Festival 2020

Rare Disease Day 2020

Rare Disease Day 2020

Rare disease patient portraits

Rare disease patient portraits

Annual update to Welsh Implementation Plan

Annual update to Welsh Implementation Plan

Patient Empowerment Group: March 2019

Patient Empowerment Group: March 2019

Call to action: open letter to the UK Government

Call to action: open letter to the UK Government

Update to the implementation plan for England

Update to the implementation plan for England

Illuminating the rare reality

Illuminating the rare reality

UK Rare Disease Forum Conference 2018

UK Rare Disease Forum Conference 2018

Donate while you shop with Amazon

Donate while you shop with Amazon

Support Rare Disease UK on #GivingTuesday

Support Rare Disease UK on #GivingTuesday

Annual Meeting 2017

Annual Meeting 2017

Mental health and rare disease: report launch

Mental health and rare disease: report launch

Fundraiser of the Week: Maddy

Fundraiser of the Week: Maddy

Mental health support

Mental health support

UK STRATEGY FOR RARE DISEASES PROGRESS REPORT 2018: OUR RESPONSE

UK STRATEGY FOR RARE DISEASES PROGRESS REPORT 2018: OUR RESPONSE

Implementation plans for England published

Implementation plans for England published

UK RARE DISEASES POLICY BOARD PUBLISHES SECOND REPORT

UK RARE DISEASES POLICY BOARD PUBLISHES SECOND REPORT

Emotional wellbeing and mental health survey

Emotional wellbeing and mental health survey

UK Rare Disease Forum Conference

UK Rare Disease Forum Conference

One step closer: Rare disease plans for England

One step closer: Rare disease plans for England

Children and Young People’s project

Children and Young People’s project

Rare Disease UK AGM 2016

Rare Disease UK AGM 2016

Government announces plans to implement the UK Strategy for Rare Diseases with NHS England

Government announces plans to implement the UK Strategy for Rare Diseases with NHS England

We need your help: Westminster Hall Debate on the UK Strategy for Rare Diseases

We need your help: Westminster Hall Debate on the UK Strategy for Rare Diseases

APPG launches report on the implementation of the UK Strategy for Rare Diseases in England

APPG launches report on the implementation of the UK Strategy for Rare Diseases in England

Latest news from the Welsh Rare Disease Implementation Group

Latest news from the Welsh Rare Disease Implementation Group

Join our Rare Disease Day photo challenge!

Join our Rare Disease Day photo challenge!

Members of Scottish Parliament meet rare disease patients

Members of Scottish Parliament meet rare disease patients

NHS England and NICE respond to rare disease patients

NHS England and NICE respond to rare disease patients

Department of Health and its arm’s length bodies provide evidence to APPG inquiry

Department of Health and its arm’s length bodies provide evidence to APPG inquiry

MPs hear patients’ views on the implementation of the UK Strategy for Rare Diseases in England

MPs hear patients’ views on the implementation of the UK Strategy for Rare Diseases in England

What is the cost of managing a rare condition?

What is the cost of managing a rare condition?

Reconfiguration of UK Rare Disease Forum

Reconfiguration of UK Rare Disease Forum

Rare Disease Day 2016 – Westminster Reception

Rare Disease Day 2016 – Westminster Reception

Delivering for patients with rare diseases: Implementing a Strategy

Delivering for patients with rare diseases: Implementing a Strategy

Launch of the All Party Parliamentary Group on rare, genetic and undiagnosed conditions

Launch of the All Party Parliamentary Group on rare, genetic and undiagnosed conditions

We have our beginning, and our middle, but no ending…yet

We have our beginning, and our middle, but no ending…yet

The Rare Reality – An insight into the patient and family experience of rare disease: report launch

The Rare Reality – An insight into the patient and family experience of rare disease: report launch

The Rare Disease Implementation Plan for Northern Ireland has been launched

APPG on rare, genetic & undiagnosed conditions: Open Letters

APPG on rare, genetic & undiagnosed conditions: Open Letters

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Genetic Alliance UK provides the secretariat for the following parliamentary groups on Rare, Genetic and Undiagnosed Conditions :

  • Westminster APPG
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  • Welsh CPG

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