Rare Disease Day: An IVY volunteer helping to raise awareness

Hi everyone,

If you forgot about me (don’t worry about it, I would also have), I wrote a blog post a few months ago about my experience as a project partner at RARENET, a French-German project on rare diseases. In that blog, I explained that I would be organizing an event in Strasbourg for Rare Disease Day on February 28. And I also said I would keep you updated, which is why I wrote this new blog post!

Rare Disease Day in an international event that takes place on the last day of February each year. Its main objective is to raise awareness among the general public and decision-makers about rare diseases and their impact on concerned people’s lives. For example, did you know that more than 25 million people in Europe are concerned by a rare disease? Or that most rare diseases do not have a cure yet and often go undiagnosed? Probably not. This lack of knowledge and recognition can have a lot of consequences for people concerned by rare diseases. This is a situation that can be improved, and this is why rare disease day is important!

As a volunteer, my main task was to organize the event in Strasbourg. I did not do it alone: I received support from the RARENET team and other interested parties. First, we needed to find a location where we could meet the general public. Luckily, a big commercial center inside the city quickly accepted to welcome us and let us hold an information stand close to its entrance. We then prepared a program with many different activities in order to catch people’s attention and make them come to our stand. For example, I contacted a company renting photo booth so that visitors would have the opportunity to come and show their support for rare diseases by taking pictures. We finally mobilized many people who are working or supporting the RARENET project to come on the stand: scientists, professors, members of patients’ support groups, etc.

After several months of preparation, the big day came… I was quite stressed, but everything went well! Several hundred people visited our stand and many were eager to learn more about rare diseases. The media coverage of the event was also above our expectations, and this allowed us to reach even more people (if you are curious, you can find the interviews on RARENET’s website). It was very satisfying to see such good results after having invested a lot of time and efforts into organizing the event!

My time as an IVY volunteer is now coming to an end. It has been a great experience, during which I had the occasion to do many different things and acquire new skills. The next time I will be organizing an event, I will be much more prepared! Also, I think I used my time as a volunteer to make a meaningful contribution, however modest. This was one of my main goals when I applied, so that’s great! And I learned a lot about how cooperation between EU regions looks like in practice. I will remember fondly my time as a volunteer and I hope that many more young people will have the opportunity to become IVY project partners, as it is a truly enriching experience.

Photo Credits:

Heidy-B Photos

Photo Click

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