Interview with Alessandra Tolaccia, new OIFE Board Member

Welcome to the OIFE Board Alessandra, can you tell us a little bit about you?

My name is Alessandra Tolaccia, I am 49 years old, and I am Italian. Since 2020 I am living in Italy together with my husband Marco, after few years spent in South Africa. I also lived in the UK for a few years back in the nineties and then in France. I was diagnosed with OI type I in 2015 after 6 years of struggling to find a name to what I was living with.

I have a BA (Hons) degree in Economics and Marketing from South Bank University in London (UK). And I have been working over 20 years in corporate business within Europe, with my latest job being in charge of a complex unit running both sales and customer service and directly managing over 250 employees. Currently I am self-employed, and I work as a consultant in project management for large companies mainly in Sub Saharan Africa.

In your guest editorial of a previous magazine, you referred to your life as before or after Stockholm?

Correct! Attending the OIFE Conference in Stockholm gave me a totally different perspective of being a patient, and made me realised that my professional background and my interest in education could be put in good use in the OI Community.

Why did you say yes to become a Board member of OIFE?

Because in the past year and a half I could see what a difference OIFE could make in people’s lives with its work. And I felt very proud to be asked to become part of it. I will do my best to live up to this role.

What is the most important thing you have learned through your training as patient expert?

That patients are as important as researchers and doctors when it comes to finding the right answers to a common question. If we want rare diseases to be understood better, we need to team up with all the parties involved and not just stay in our corner and wait for someone else to do what we could also be doing. Playing an active role as patients can give our community a better chance of success in finding a treatment for our disease, improve our quality of life but also make us empowered by what we do.

Where do you see OIFE 5 – 10 years from now?

I see a growing community. I see more countries becoming part of this network. I see more volunteers taking part in OIFE activities. I see more collaborations with the scientific community. I see all of these things happening because OIFE is working hard to make them happen by empowering national organisations with its support and its contribution in education and knowledge. I see this happening because we are Stronger Together and we have all realized this.

What do you do in your spare time?

I most love travelling and reading, which are somehow the same thing…just done in different ways. I am also a jazz addict, and my perfect evening is going with my husband to our favourite jazz club and drink a nice glass of wine with good food. I also love cooking and having friends over for long summer lunches and cosy winter dinners. Last, but not least, I love spending time with my dog: Prosecco! By the way Prosecco enjoys jazz nights too. He’s a real Mummy’s boy!

Any messages to the potential board members or volunteers?

Do yourself a favour and get involved in a life changing experience! This together with people who can understand who you are and what your daily struggles and daily achievements consist of, without you having to explain yourself. I think this alone is more than enough to make everyone want to join. Plus, we also know how to have fun, so no second thoughts here! Get in touch and join the crew for a memorable journey!

This article has first been published in OIFE Magazine 1-2025

Alessandra became OIFE’s first EUPATI fellow in October 2024. Follow this link to read more about it.