Back in March we teamed up REMEDi4ALL and MeRIT to bring the first international drug repurposing conference, #iDR24 that took place in Barcelona!
We’re excited to share this week’s blog written by our Chief Operating Officer, Mary Rose Roberts.
Read to hear more about all of our highlights and a summary of what we got up to during the event.
At Beacon, we are firm believers in the power of collaboration and innovation to drive positive change in rare diseases. That’s why we were thrilled to co-organise the first International Drug Repurposing Conference, #iDR24, held on 6-7 March 2024 in the stunning Sant Pau, Barcelona.
Hosted alongside REMEDi4ALL and MeRIT, this conference marked a significant milestone in advancing drug repurposing efforts across Europe.
As a partner in the REMEDi4ALL project and a co-organiser of #iDR24, Beacon played a pivotal role in shaping the conference experience.
Our team took on multiple responsibilities, from co-developing the conference, organising the poster session, and – importantly – leading the rare diseases pathway.
The rare diseases pathway
The rare diseases pathway – one of three conference streams including cancer and methodologies – featured three sessions aimed at shedding light on the importance of repurposing in this critical area.
From showcasing successful repurposing projects to exploring future initiatives, each session offered valuable insights and sparked discussions among attendees representing diverse sectors, including patient groups, researchers, regulatory bodies, and industry leaders.
Why care about repurposing for rare diseases?
In our first session, we wanted to highlight the importance of repurposing in addressing the unmet needs of rare disease patients – a community which often struggles to acquire treatments and is frequently overlooked in traditional drug development pathways.
Through talks from patients, patient groups, researchers, and industry representatives, we demonstrated how repurposing can profoundly impact the lives of those affected by rare diseases. Furthermore, we emphasised why rare diseases should be a priority on everyone’s radar when contemplating a repurposing project.
Huge thanks to our speakers:
- David Brown
- Alan Finglas
- Heinz Jungbluth
- Shira Strogin
Leading a drug repurposing project
At Beacon, one of the primary reasons we champion repurposing is because of its potential to engage non-industry players in drug development. During this session, we hosted a panel discussion featuring clinicians, patient groups, funders and researchers who are actively involved in repurposing projects. Together, they emphasised the importance of collaboration in repurposing initiatives, and shared some of the major challenges and opportunities inherent in these endeavours.
And, of course, we couldn’t leave Barcelona without leaving our unmistakable ‘Beacon stamp’ on the conference. Alongside our panel, we also held our – now internationally famous – lightning talk challenge! Following a rigorous selection process, we welcomed five attendees to the stage, each vying to #BeatTheBell. Congratulations to Daniela whose quick-fire presentation earned her the crown!
Huge thanks to our panellists:
- Barbara Goodman
- Oscar De La Pasqua
- Nick Sireau
- Tim Barrett
And to our lightning talk speakers:
- Tobias Zahn
- Vincent Van Der Wel
- Paul Martin
- Peter-Bram ‘T Hoen
- Daniela Sanges
The evolving rare disease landscape
In our final session, our goal was to provide a comprehensive overview of the rare disease repurposing landscape, shedding light on past successes, ongoing projects and future prospects. Through a series of talks from industry, patient groups, clinicians, researchers and funders, we aimed to explore the repurposing journey in depth.
We uncovered the driving forces behind initiatives, highlighted crucial aspects necessary for success, and identified areas where future support is needed. Additionally, we discussed major advancements on the horizon and explored how these can deliver greater benefit to the patients who need it most.
Huge thanks to our speakers:
- Anneliene Jonker
- Timothy Barrett
- Lindsay Randall
- Laurent Martin
- Catriona Crombie
My closing thoughts
All in all, the conference proved to be a major success, drawing over 230 attendees from around the world. Personally and professionally, #iDR24 stood out as a significant highlight for me. I could never have imagined back when I joined Beacon in 2016 – then just a team of 4 – that we would ever have the opportunity to contribute to such a monumental event. Whilst the road was challenging at times, it was a hugely enjoyable and rewarding experience.
A standout moment for me was the presentation delivered by Shira Strongin in our “Why care about repurposing in rare diseases” session. She spoke about how her life had been saved by a repurposed drug and shared that should wouldn’t even be alive today without it.
But she also spoke about how privilege has a major impact on patients’ access to drugs. She touched on her own experiences and how family connections and knowledge of the medical arena made it easier for her to access these treatments, but not all in her position were so lucky.
She stressed the need to make access to treatments a priority and aptly stated “a drug that works means nothing if you can’t get it to patients”.
Here’s what the rest of our team thought!
“When planning #iDR24 we knew we had to both communicate the exciting potential of drug repurposing, and the real challenge of delivering a repurposed drug to patients.
I was so pleased that the event really struck this balance, as highlighted by the audience’s reaction. The whole event had such a positive and engaged atmosphere, a group of people enthused by the potential for repurposed drug to meet unmet medical need, and determined to deliver real change.
I can’t wait to unleash the potential of this positive group again in 2025!”
Rick Thompson, CEO
“The #IiDR24 conference in Barcelona was great – we had an amazing venue and huge range of different speakers.
I think Beacon’s patient-centric rare disease track was a big highlight for many of the attendees – hearing patient voices resonated with researchers, funders, and people from all around the repurposing community. We received loads of really positive feedback and I hope facilitated some new collaborations!
It was my first time meeting people in person who I’ve been working with online for months. I think the value of in person conferences can’t be overstated: they provide space for networking and personal connection you just can’t get online. I think those relationships are essential to bringing treatments from ideas to really medications that benefit patients.”
Abby Stock-Duerdoth, Scientific Projects Officer
One of the most impactful moments for me was hearing from advocate and mother Lindsay Randall who spoke about her journey with her son who lives with SLC6A1 ‘a disease so rare it has no name’.
Lindsay is a paediatric nurse and noticed seizures in her son as early as one month, despite this is still took 18-months for her family to receive the diagnosis – a frustratingly common story of diagnostic odyssey.
However, Lindsay’s talk was one of hope as a patient group funded trail has identified a repurposed drug called phenylbutyrate which control the seizures.
The impact of this drug has been life changing for families with one parent reporting that their child was suicidal before receiving this treatment but after 18-months are happy and sociable. Lindsay is now turning her efforts to gaining access to this to treatment for her own children.
Hannah Harvey, Projects Manager
With thanks to our funders who supported this conference
Catch up now!
Thank you for taking the time to read our blog on #iDR24!
If you weren’t able to attend the event in-person, you can catch up and listen to all of the talks on the Resources Hub.
