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- What is an orphan drug?
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- 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
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Contribute to the Rare Barometer Programme
Are you from a company or a research centre? EURORDIS is the voice of the 30 million people living with a rare disease in Europe and is working to make this voice stronger through the EURORDIS Rare Barometer Programme.
Why?
Be part of a novel and innovative EURORDIS programme that is working to strengthen the voice of rare disease patients in Europe and also worldwide.
Corporate contributors play a vital role in the Rare Barometer Programme.
Financial support and in-kind services enable EURORDIS to streamline all of the programme’s patient survey activities now and in the long-term.
How?
Corporate partners may be recognised in several ways:
- Recognition in the dissemination of survey results
- Representation in the Rare Barometer Advisory Committee
- Logo inclusion in the EURORDIS Annual activity report and Financial report
In addition, for transparency purposes, the contribution will be listed in the EURORDIS Financial report and in the funding section of eurordis.org.
For information about the programme, please contact Sandra Courbier, Rare Barometer Leader rare.barometer@eurordis.org.
Current contributors:
Thank you to all companies supporting Rare Barometer through EURORDIS International Initiatives.
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This website received funding under an operating grant from the European Union’s Health Programme (2014-2020)
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