2025/02/10

A deep dive into Rare Disease research: Ruairi Mackenzie's comprehensive exploration at CIC bioGUNE

Ruairi Mackenzie, an independent journalist based in Glasgow, Scotland, has recently completed his stay at CIC bioGUNE, member of BRTA, where he actively explored the research conducted at the center, with a particular focus on projects related to rare diseases. Over the past three months, he has closely engaged with the research community to gain an in-depth understanding of the work being carried out in this field.

Additionally, Ruairi has established connections with various patient foundations and associations, including an interview with Fide Mirón, president of the Spanish Porphyria Association (AEP), which is part of the Spanish Federation of Rare Diseases (FEDER). Through these interactions, he has gained insights into different perspectives and helped bring patients’ stories to light. His work will contribute to strengthening the bridge between science and society, highlighting the importance of rare disease research and its impact on the lives of those affected.

What motivated you to join the FRONTIERS program and choose CIC bioGUNE as your host institution?

So, I've been a scientific journalist for seven years, I'm in the middle point of my career, and I wanted to focus on a particular beat in more detail, and the beat I decided on was rare disease research, and I saw that CIC bioGUNE had a really strong line of work in rare disease research, and I saw it as a perfect opportunity to learn more about this area of science.

How has the collaboration with the researchers and team at CIC bioGUNE been during your residency?

The collaboration has been straightforward. So many research groups I've talked to have welcomed me into their lab meetings, have been really open with me about their lines of work, and this wasn't something I really expected, I've been really welcomed. That's cool.

Is there any research work or project that has impacted you the most? Why?

All the research projects I've seen here have been really fascinating, and I think they're all really pushing science forward, but I want to highlight the work of Óscar Millet and his team. They've taken insights learned using biophysical techniques like NMR and taken them all the way through to working with patients in a phase 2 clinical trial, and I think that really shows the advantage of basic research, that it can go all the way through to helping people.

What extent do you think science journalism can contribute to the understanding of complex research like the work done here?

I think science journalism can do a lot towards decoding these kind of more complex research topics, but one thing I've learned here that's really important is that journalists need the help of scientists to be able to understand some of these more complex and technical topics, they need to be able to work together to make sure that research is communicated accurately and truthfully.

And about your experience, what have been your biggest takeaways from your time at CIC bioGUNE?

I'd say my biggest takeaways have been that rare disease research here is really in swing, there's so many exciting projects happening. I'd say that I've realised that there's a world of basic research out here that doesn't normally make the headlines but is doing so much towards advancing these really important research lines. 

And was there a revelatory moment or something unexpected that surprised you in your work at the centre? 

I think probably the thing that surprised me most was, as I said earlier, just how much I was welcomed into different labs.

I think sometimes as a freelancer, when you're doing a lot of your reporting over Zoom or through email, you can feel like scientists don't have time for communication, but here in person, I really felt like I was welcomed and that they wanted to help and were really interested in what I was doing. So that was a big surprise to me, but a very welcome one. This is really nice.

What kind of content do you plan to create about the research you covered during your residency?

So, a lot of my reporting is shorter, news-style articles, but I want to use the insights I've learned at CIC bioGUNE to focus more on longer feature-length pieces. I think having three whole months here to get in-depth insight into the research that's going on here will be invaluable in writing these deeper pieces. 

How was your residency influenced; the way you approach science in your future journalism projects? 

I think it'll make me more patient. I think, again, sometimes when it's more news-focused writing and you're sending out emails and not getting responses, it can be easy to feel frustrated or like things aren't going your way. But here, as I said earlier, I've realised that scientists really are passionate about communicating their science and really want to make sure journalists get things right in communicating their work. And so, I think having a bit more patience and waiting for the right insight to come along is going to be the result of this residency.

And about the relationship between science and media, what advice would you give to scientists to improve their relationship with journalists and ensure effective communication of their discoveries?

I think what would be really helpful as a journalist to ask scientists I speak to in an interview is to, before each interview, have a little think about what makes your research newsy and what's the hook of your research. So, a thing I like to imagine is you sit down at a dinner table with your family and say your great-aunt asks you, what's your research about? Think how you'd summarise it to her nice and quickly without making everyone's food get cold while you're speaking.

If you can do that, then you can talk to a journalist and you can boil down the complex nature of your research into something which works well in a news article or a feature.

Looking back, is there a specific moment or story that makes you feel especially proud of your time at CIC bioGUNE? And what message would you like to leave for the CIC bioGUNE community at the end of your residency? 

I think something that made me feel proud was that while I've been here, I've had a big whiteboard set up in my office where I've been noting down all the different interviews I had to schedule and things I had to arrange. And coming in one day recently and just seeing how much of it I'd filled up and how many of my objectives I'd achieved with the help of the scientists here, being so open and welcoming was a real moment where I felt proud.

I'd just love to give them a big thank you for having me. I know that a lot of them were curious about what I was doing and I think it might have been easy for them to say who's this journalist, why is he poking around, I don't want to talk to him but all of them have really been so welcoming and clearly so many are so passionate about communication of science as well which is really invigorating for me.

What’s next for you after this experience? 

I need to go home and write everything up so I've got plans to begin pitching and writing my feature articles, but I want to make sure I can tell the stories I've learned here. 

If you had to summarize your time at CIC bioGUNE in one word or phrase, what would it be?

¡Que guay! Yeah, so much of the research here has been so cool and awesome and it's been a joy to learn it and find out more about it.

About CIC bioGUNE

The Centre for Cooperative Research in Biosciences (CIC bioGUNE), member of the Basque Research & Technology Alliance (BRTA), located in the Bizkaia Technology Park, is a biomedical research organisation conducting cutting-edge research at the interface between structural, molecular and cell biology, with a particular focus on generating knowledge on the molecular bases of disease, for use in the development of new diagnostic methods and advanced therapies.

About BRTA

BRTA is an alliance of 4 collaborative research centres (CIC bioGUNE, CIC nanoGUNE, CIC biomaGUNE y CIC energiGUNE) and 13 technology centres (Azterlan, Azti, Ceit, Cidetec, Gaiker, Ideko, Ikerlan, Leartiker, Lortek, Neiker, Tecnalia, Tekniker y Vicomtech) with the main objective of developing advanced technological solutions for the Basque corporate fabric.

With the support of the Basque Government, the SPRI Group and the Provincial Councils of the three territories, the alliance seeks to promote collaboration between the research centres, strengthen the conditions to generate and transfer knowledge to companies, contributing to their competitiveness and outspreading the Basque scientific-technological capacity abroad.

BRTA has a workforce of 3,500 professionals, executes 22% of the Basque Country's R&D investment, registers an annual turnover of more than 300 million euros and generates 100 European and international patents per year.

Spanish version