How we will use your reasons

Why are we collecting your reasons?

We are collecting reasons from across the rare disease community and beyond for why Europe needs to take action.

We want the European Commission to understand what it is like to live with a rare disease, or know someone who does, which is why we are asking for personal reasons. We think this shows why we need action better than anything else!

How will we use this information?

With your permission, we may use your reason, alongside your first name and country, in further communications about the campaign, and in creating a public book of reasons for President of the European Commission, Ursula von der Leyen.

In line with data protection regulations we will “clean” the data before use, so it will not be identifiable in any way. For example, if you have mentioned your disease or the name of a hospital we will replace this with “my rare disease” or “the hospital where I am treated”.

If you do not want your name, country and reason to be published anywhere, we still want you to share them with us! It will still count, we will just not use it in public.

If you decide at a later date that you do not want this information to be published we may not be able to retract quotes in communications, but we will delete the data and it will not be used further.

Your data will not be passed on to anybody outside of EURORDIS, and will be looked after carefully as per our privacy policy.

 

Contact

For any questions please contact campaigns@eurordis.org

 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect 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.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day 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 initiativeEuropean Conference on Rare Diseases