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- What is an orphan drug?
- Improve the safety of your medicines
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- Role of EURORDIS
- Patient advocates involvement
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- List of the latest marketing authorisations and orphan medicinal products designations
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COVID-19 survey communication toolkit
Use these resources, available in 7 languages, to share the new global Rare Barometer survey with your networks.
The more people who respond and share their experiences, the more powerful our voice will be!
Click on the links to download the materials.
1. Survey hyperlink
Share this link to the survey: https://bit.ly/2xCUw9l
2. Rare Barometer survey overview
Learn more about the survey, who can respond and how the results will be used.
Rare disease patients experience of COVID19 survey overview
3. Language-specific communications materials
Download and use the suggested posts, images and email template, translated into your language, to promote the survey via your networks. You can also share our posts from @eurordis on Twitter, @eurordis on instagram or the EURORDIS Facebook page via your social media accounts.
English
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French
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German
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Italian
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Portuguese
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Russian
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Spanish
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4. Rare Barometer logos
Use the Rare Barometer logos alongside articles promoting the survey on your website.
Rare Barometer Logo (white)
Rare Barometer Logo (purple)
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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