Brussels Rare Disease Week 2021

When is Brussels Rare Disease Week?

Brussels Rare Disease Week (RDW) will take place during the week of 22 February 2021, organised in the lead up to Rare Disease Day 2021 (28 February)

What is Brussels Rare Disease Week?

Brussels RDW is a week-long series of events organised by EURORDIS in Brussels, plus a series of preparatory webinars. The goal is to empower you, rare disease patient advocates, with knowledge and skills to effectively participate in advocacy activities at the European level and as a result influence the EU decisions that have a direct impact on your lives.

Through RDW, the hope is to raise awareness of rare diseases and present a strong and united message to MEPS and other policy-makers in Brussels on behalf of the rare disease community.

The week will be made up of events including trainings, meetings with policy makers and networking events. During the week, participants will be able to put their knowledge into practice and raise awareness of their rare disease at the European Parliament.

See the full schedule of webinars and events

 

Why apply?

>> Are you already involved in advocacy activities at your patient organisation?
>> Do you already work in public affairs and on influencing your national policy makers?
>> Do you want to know more about what the EU can do for people with a rare disease?
>> Would you like to improve your knowledge of how to engage in EU advocacy?

Then Brussels Rare Disease Week is for you - become empowered with knowledge and engage directly with policy makers! Become a link between your organisation & Brussels.

Who can apply?

  • Patient representatives working for or directly affiliated to a rare disease national alliance or European federation (and from the EU, EFTA & EU candidate countries) that is a EURORDIS member organisation.
  • Before applying please consider whether you are able to make the time commitment to participate in all events in Brussels 22-25 February and the preparatory webinars listed above (10 hours over 4 months).
  • Knowledge gained from participating in RDW will help you to continue to advocate at the EU level and engage in future EURORDIS advocacy efforts for years after.

How to apply

  • For more information on how to apply read this information sheet.
  • The deadline to apply is 18 September.

Any questions please contact kostas.aligiannis@eurordis.org.

A note about COVID-19

In light of the COVID-19 pandemic we will put in place contingency plans. In case participants are unable to travel due to any restrictions or health concerns, they will still be able to participate in all or part of the Brussels Rare Disease Week activities.

Based on our experience running our European Conference for Rare Diseases and Orphan Products online, and in covering numerous training sessions from the Open Academy to interactive training, we are confident that we can adapt to any eventuality.

Page created: 07/08/2020
Page last updated: 31/08/2020
 
 
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