Who are you and what is your connection to OI?
I am Julien Delaye, 26 years old, living in Belgium. Over the past seven years, I studied marketing, European Public Health, and more recently Public Policy and Administration, which took me to several places such as Denmark, the Netherlands, Finland and Ireland. A few months ago, I got introduced to Ingunn Westerheim as I had finished my studies in Dublin and was then actively looking for a first job.

Why did you decide to volunteer as an intern for OIFE?
Over my academic journey, I have developed a strong interest in rare diseases, with a clear emphasis on how patients and patient communities could contribute to future developments in healthcare. After meeting with Ingunn via Skype and being offered an intern position, I though working with OIFE was most definitely in line with my personal interests and motivations, as well as a great starting point for my career. What contributed to my decision to become an intern for OIFE is that I had – and of course still have – the feeling that, while acquiring some experience, I could make myself useful at the same time, and apply my personal skills to a good and important cause. I believe it is a win-win collaboration and, as a first job, I think it really helps me connecting with the rare disease world in a truly stimulating and human way.

What are your main interests professionally?
My main professional interests encompass rare disease policies in Europe and the roles patient associations could fill in various stages of policy and/or treatment developments. Having a quite political and public health background, I am especially interested in the European and national projects that could benefit from patients’ expertise and experience. In the future, I would like to work as a patient advocate in policy making, ideally at the European level, which is why the mission and activities of OIFE deeply appeals to me.

And hobbies?
In my free time, I am a great fan of traveling, mostly when it takes me to unusual places where most tourists don’t go. I also never say no to opportunities to try local food specialties while traveling, the fermented shark in Iceland and indescribable dishes in Cambodia being my most memorable experiences in that regard! I also love reading, writing novels or poems, and I recently developed a true fascination for Scandinavia. So I try to immerse myself in the Scandinavian culture through music and art. And of course, as Belgian, I must mention my love for beers and microbreweries from all over the world.

Julien taking notes at OIFE AGM

Do you have an advice to others who might consider volunteering for OIFE or another non profit?
While I had never really thought about it before finishing my studies, I truly enjoy being a volunteer for OIFE. I believe it is the kind of experience that helps you shape your career in a perhaps more human and ethical way. I don’t really have specific advice for whoever is thinking about volunteering, except that you should be motivated to bring something, even if it may seem a small thing, to the non-profit your are applying at. If you are, then find the domain you are interested in and start looking for that kind of organization. Any organization that appeals to you for a certain reason is always a good choice.