- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
National plan for rare diseases: UK
Please find documents on/ relevant to the UK rare disease national strategy and implementation plan in each of the four nations (England, Northern Ireland, Scotland and Wales) and EUROPLAN conferences listed below:
- UK_RD National Strategy_2013
- England_RD Implementation Plan_2018
- Northern Ireland_RD Implementation Plan_2015
- Scotland_RD Implementation Plan_2014
- Wales_RD Implementation Plan_2015
- EUROPLAN_2010_UK National Conference_Report
- EUROPLAN_2014_UK National Conference_Report
National contact:
Genetic Alliance UK
www.geneticalliance.org.uk
contactus@geneticalliance.org.uk
Rare Diseases UK
Rare Disease UK is a campaign run by Genetic Alliance UK
www.raredisease.org.uk
info@raredisease.org.uk
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative