- 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
Why get involved?
Have a say in EU policy making
Strategies and plans for rare diseases are currently being developed by the European Union and many of its Member States. The results taken from the Polka Decide project will be used and debated at the European Conferences on Rare Diseases providing valuable data for advocating policies chosen by the rare disease community at a national and EU-level.
Improve your understanding of complex and highly relevant issues
The six Decide topics were carefully selected on the basis of their relevance to the rare disease community.
For example, in early 2011 the EU released a directive on cross border healthcare and gave member states until 2013 to transpose this into national law. The Decide topic entitled ‘Cross Border Health Care’ provides a good introduction to the subject and helps uncover some of the key issues which need to be addressed by patient organisations, hospitals and health care providers.
See all the Decide rare disease topics.
Nick Sireau, President of the AKU Society:
‘Decide provides a fantastic opportunity to learn about some of the key issues facing rare disease patient groups today. I was thoroughly impressed by the quality of the session and how much I learnt.'
Jana Mbundi, Tuberous Sclerosis Association:
“I've already taken part in three Decide sessions. This debate session is a great tool to engage people from all walks of life to talk about various issues relating to rare disease patients and their families. It can easily be used to increase public awareness of rare diseases, the obstacles patients and their families have to deal with, possible solutions and what the general public can do to help.”
Sonja Van Weely, Dutch Steering Committee on Orphan Drugs:
"The participants of the Dutch Decide sessions were quite enthusiastic afterwards. They appreciated the discussions within the topics. Several participants have indicated to me that they would like to run the sessions within their own organisation in the near future".
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiative
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, Rare Diseases International is a EURORDIS initiative
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