Beacon highlights: Our Q1 Roundup!

Apr 10, 2026

We’ve kicked off 2026 with real energy and momentum at Beacon!

From bringing people together through training and events to amplifying voices across the rare disease space, the first few months of the year have been full of collaboration and meaningful progress.

In this Q1 round-up, we’re reflecting on some of the moments that stood out most to our team, whether that’s supporting patient groups to build confidence and skills, contributing to important conversations shaping the future of rare disease policy or creating spaces where the community can connect, learn and lead change together.

Take a moment to explore the highlights from our first quarter and celebrate the progress we’re making together!

Let’s hear from the Beacon team!

Dr Rick Thompson – CEO

It has been a busy start to 2026 at Beacon, but one big standout for me was getting to record this season’s final episode of our Rarely Heard Podcast.

For this episode we wanted to really explore the evolving world of rare disease policy in the UK – with the need to secure a new rare disease framework in early 2027, a newly proposed pathway for rare disease regulation, and more active rare disease research networks – it certainly feels like an exciting and pivotal time for the rare disease community.

Rick Thompson, Nick Meade, Rosie Lindup, Julian Beach, and Alessandra Gaeta mid-discussion in a podcast studio with blue light.

Rick Thompson, Nick Meade, Rosie Lindup, Julian Beach, and Alessandra Gaeta smiling at the camera in a podcast studio.

So, this March I got to sit down with Nick Meade (CEO of Genetic Alliance UK), Rosie Lindup (Bioindustry Association), Julian Beach (MHRA) and Alessandra Gaeta (LifeArc) to explore what is happening and what we can hope for in rare disease policy this year. It was great to set up in a professional recording studio and capture a really broad discussion with an amazing group of experts.

Throughout we really heard how patient input is making a big difference to the space, whether by driving the MHRA to be more ambitious with its regulatory proposals, or underpinning the themes of the Rare Disease Framework.

I’m excited to see the episode go live and see what you all think!

Mary Rose Roberts – Chief Operating Officer

In February, I embarked on a blink-and-you’ll-miss-it trip to Brussels!

It was an early start for me and ‘The Pill’ as we headed into London before sunrise to catch the 9am Eurostar, arriving in the Belgian capital just after midday. Once there, I made my way across the city to meet my REMEDi4ALL colleagues Ivette, Jake and Nikoleta – just some of our co-conspirators behind #iDR26, the international drug repurposing conference taking place in Brussels on 12th and 13th May.

Eurostar train on the platform. Text reads 'Brussels'

Red and white 'pill' shaped sign. Text reads '#iDR International Drug Repurposing Conference'.

Selfie of Mary Rose, Jake, Nikoletta, and Ivette. They are smiling outside of the venue.

We were there to conduct a ‘reccy’ of the iconic Maison de la Poste, our venue for the 2026 conference. When planning something of this scale, it’s incredibly useful to revisit the space once plans have taken shape as it allows you to properly visualise how everything will come together, whilst spotting any potential hiccups ahead of time. We also had the chance to connect with our external AV team to run through our more complex requirements, making it a really useful and productive afternoon.

After a packed few hours, I had just enough time before heading home to squeeze in one of Belgium’s famous waffles – mine topped with whipped cream and dulce de leche sauce. Yum!

With only a few weeks to go until the Beacon team returns to Brussels for #iDR26, now’s the time to secure your spot.

Ticket sales are ending soon!

Belgian waffle with whipped cream with a small Belgian flag on a cocktail stick

Elizabeth Proctor – Senior Events Officer

Masterclass attendee holding a sign and smiling. Text reads 'I'm a rare disease advocate because we deserve to live lives of joy'.

In March, we brought back our successful masterclass: An introduction to charity finances! Across three virtual sessions, Caron Bradshaw, Growth and Sector Solutions Lead at the Charity Finance Group, equipped 22 attendees with the skills and guidance needed to confidently manage their charity’s finances.

The masterclass offered a safe and welcoming environment for attendees to learn, as well as share their own perspectives and challenges.

Thank you Caron for another brilliant masterclass – we’ll let the feedback speak for itself:

“I no longer feel daunted by dealing with the financials!”

“Caron was knowledgeable, engaging, friendly and warm. I particularly valued her balanced view of the need to not let tools dominate reality.”

Megan Burley – Senior Scientific Projects Officer

Back in March, I was involved in organising and delivering the REMEDi4ALL Drug Repurposing Bootcamp for Academics. This was our second one to date, and it’s always so fun getting to spend time with our REMEDi4ALL colleagues, and meeting all of the amazing participants.

The training took place across two days at Hinxton Hall Conference Centre, and we welcomed 16 participants and were supported by 9 expert trainers. Having been involved in organising the event, it was really exciting to see it all come together.

Group photo of Drug Repurposing Bootcamp attendees. They are stood outside on a sunny day, with trees in the background, and are smiling at the camera.

The Academic Bootcamp is designed for early-career researchers who are working on drug repurposing projects and want to better understand the full development pathway.

Over the course of the training, we took participants through each stage of the repurposing pathway, covering topics such as patient collaboration, and how to get repurposed drugs to market.

Megan Burley behind a lectern, speaking at the bootcamp with a PowerPoint presentation. Attendees are sat on chairs listening.

Bootcamp attendees working together at tables in groups of around 5.

For me, one of the best moments of the Bootcamp was watching the teams play Repurpolis, an interactive drug repurposing board game developed by one of our REMEDi4ALL collaborators. This game is a great way to break the ice and the teams always get very invested in the game.

Overall, it was a great couple of days, and I am already looking forward to the Patient Bootcamp, which will be taking place at the end of this year!

Maddie Still – Senior Patient and Scientific Engagement Officer

My stand-out moment from Q1 2026 was attending a multi-stakeholder meeting as part of the REMEDi4ALL project, which Beacon is a key partner in. The REMEDi4ALL project aims to build a sustainable European platform to enhance the repurposing of medicines for all, including those affected by rare diseases.

In this meeting specifically, we brought together clinicians, patient groups, industry representatives and regulatory experts to discuss the repurposing of a drug for rare types of epilepsies and the best way for patients to have access to this drug going forward.

I really enjoyed being part of this meeting as it was wonderful to see so many people invested in getting the best outcome for patients and their families.

It was also great to see patient groups have their say on what matters to them, and to have the patient perspective heard by clinical leaders in the field of rare epilepsies.

A group photo of 12 multi-stakeholder meeting attendees. They are wearing formal clothing and smiling at the camera.

Hannah Harvey – Projects Manager

Bringing the rare disease community together for in-person training is always a highlight for me, and our recent Storytelling Masterclass was no exception, in fact, it may have been one of my favourite trainings we’ve ever delivered.

Close up photo of two masterclass attendees at a table, smiling.

Room of masterclass attendees working together on tables in groups of around 4.

Our fantastic trainer, Dave Taylor-Langdale from Word Monster, guided patient group leaders through the powerful role storytelling can play in driving meaningful change. We began by exploring the science behind storytelling before working through a practical framework that helped attendees craft their own stories step by step.

Blayne Baker and Dave Taylor-Langdale stood in front of yellow and purple Beacon-branded banner, smiling at the camera.

Along the way, we explored the importance of understanding your audience, taking part in interactive exercises that challenged us to step into the mindset of the people we hope to influence.

It was an inspiring and energising day, made even more special by the connections forming between attendees as they shared experiences, learned from one another, and strengthened the sense of community that sits at the heart of everything we do.

Kate Elliott – Senior Operations Officer

I have been lucky enough to be involved in supporting on the logistics of a lot of the events and projects that have been arranged by the Beacon team in the first few months of this year, culminating in the most recent event with our partners over at LifeArc for their ‘Roadmap for Rare: accelerating translation across the rare disease ecosystem’ conference event.

Man drawing on poster that is stuck to the wall. It has a white background, black text and red banners. The text is obstructed but reads ' rare disease ecosystem'.

White introductory PowerPoint slide. Text reads 'LifeArc Translational Research Centres'.

Event welcome pack. Red and grey background with white text that reads 'Roadmap for rare: Accelerating translation across the rare disease ecosystem'.

Hosted by LifeArc Centre for Rare Respiratory Disease, and as members of the TrC4RD Hub, Beacon were asked to help support on capturing some footage from across the day, which included a wide breadth of diverse talks underpinning the themes for driving rare disease translation across the rare disease ecosystem. The day was full of various expertise, conversations and discussions related to this pivotal topic.

Beacon is proud to be working with LifeArc, Genetic Alliance UK and the centres, as part of the LifeArc Translational Centres for Rare Disease Hub and we were really pleased to be a part of it.

Blayne Baker – Digital Resources Manager

Could you really have a Q1 round-up blog without highlighting Rare Disease Day 2026!

To mark Rare Disease Day 2026, we shared powerful stories, videos, podcasts and testimonials from the rare disease community across 28 days on our LinkedIn and Facebook.

I love advent calendars, so this campaign was such a joy to manage, as each day showcased something new, harking us back to one fantastic story and achievement from the community after the other. I already knew the rare community was remarkable but seeing the community’s resilience, creativity and strength unfold throughout the month was powerful.

A screenshot of a Beacon LinkedIn post. The text introduces an essay written for the Student Voice Prize 2023, highlighting the experience of two families affected by Creutzfeldt-Jakob Disease.

A screenshot of a Beacon LinkedIn post. The text highlights a Beacon article highlighting Andy Ryan's journey with Klippel-Trenaunay-Weber Syndrome

A screenshot of a Beacon LinkedIn post. The text highlights the 'True Faces of Rare' project by Chiesi UK and Ireland and Metabolic Support UK

I want to thank you for following along throughout the month of February. Your engagement, reflections and enthusiasm brought so much life and energy to the campaign. It was a pleasure to raise awareness of not only Beacon’s work, but also the many initiatives, voices and experiences that make up this community. Thank you for the kaleidoscope of memories and for trust us to share your story on our platforms.

Head to our LinkedIn and Facebook now to review the campaign if you missed it!