Why February? Why Brussels?

Rare Disease Day has, over the past seven years, become an important date on the rare disease calendar. Indeed, Rare Disease Day has developed into an internationally recognised awareness-raising campaign for the whole rare disease community. Rare Disease Day takes place each year on the last day of February. We see this period as being the perfect opportunity to maximize the synergy between these two events. See the Rare Disease Day website here: http://www.rarediseaseday.org/

In-keeping with EURORDIS’ mission to build a strong pan-European community of patient organisations and people living with rare diseases and to be their voice at the European level, it was evident to us that the EURORDIS Awards & Black Pearl Evening should take place in Brussels.

In addition, the EURORDIS Awards & Black Pearl Evening is the only charitable dinner held in Brussels for a truly “European” organisation in the field of rare diseases, thus emphasising its rarity.

 

rddvideo

This is the official video for #RareDiseaseDay 2017! Research: With research, possibilities are limitless!

Rare Disease Day is a patient-led campaign that brings together millions of patients, families, carers, medical professionals, policy makers and members of the public in solidarity – everyone can get involved!

The Rare Disease Day 2017 theme is research and slogan “With research, possibilities are limitless”. Rare disease research is crucial to providing patients with the solutions they need, whether it is a treatment, cure or improved care. The tenth edition of Rare Disease Day will see people from all over the world come together to advocate for more research on rare diseases.

People living with a rare disease are sometimes unable to find answers and medical solutions they need, often because of a lack of research. To illustrate this frustration, this year’s video draws a parallel with a routine that many of us go through multiple times a day – searching for an answer on the internet. The video highlights how isolating it is when you search on the internet but receive the response ‘your search had no results’.

Share the video to become part of the international campaign!