This past quarter of the year (Q3) has flown by! The last three months have been packed with tonnes of thought-provoking conferences, alongside lots of work on our exciting Rare Insights Study into the impact of rare patient groups.
Delve into Beacon’s experiences of Q3 in our highlights blog below! Hear from all of us at Beacon about what our stand out moments have been across July to September.
Over to the Beacon team!
Blayne Baker- Senior Digital and Engagement Manager
I closed out September at the RareXchange Summit 2026 in London!
The RareXchange is a community of rare disease leaders and advocates working together to improve rare disease and specialised services through collaboration, shared experience and collective action.
The day started off with a poignant animated video created by Alexion that shared Layla’s journey with atypical HUS (aHUS), from the first signs and diagnosis through to treatment and reclaiming life.
In “Layla’s Mountain,” she opens up about fear, resilience and the support that helped her navigate a rare disease, offering hope to anyone facing an uphill climb.
This video grounded the Summit by reinforcing why we all work in rare disease.
I thoroughly enjoyed the RareXchange meeting new advocates from across the sector (and country!), as well as seeing so many familiar faces. A highlight of the summit for me was, without a doubt, the workshops.
Our host, Alexion, did a fantastic job of ensuring our workshop tables were mixed with passionate individuals from every corner of the rare space.
I got to learn from NHS commissioners, Nephrology professionals (a branch of medicine focused on the health, function and diseases of the kidneys), endocrinologists (a doctor who specialises in diagnosing and treating conditions related to hormones, such as diabetes, adrenal conditions and pituitary gland diseases), cardiologists (a doctor who specialises in diagnosing, treating and preventing diseases of the heart and blood vessels), rare patient group leaders and more.
I even got to enjoy the day with my colleague Hannah, which made the whole day even better from start to finish.
With September and the RareXchange officially in the books, I’m looking forward to October and the many events waiting for me during my favorite season, Halloween!
Hannah Harvey – Head of Patient Group Programmes
On the 13th of August myself and Maddie went to London to attend ‘Herd to be Heard’ a workshop delivered by Atlantis Health and Novo Nordisk.
This workshop bought together stakeholders from across the rare community to discuss how patient organisations can contribute to the NICE Health Technology Assessment (HTA) process. We heard from individuals on both side of the process and learnt from their experiences and challenges. I really enjoyed connecting with the other attendees and came away with a greater understanding of HTA and the patient groups role!
Mary Rose Roberts – Chief Operating Officer
In September, I was pleased to attend Genetic Alliance UK’s Future for Rare Summit in London. Over the summer, Rick, Megan and I each sat on various working groups discussing the next evolution of the Rare Diseases Framework. Whilst Rick and Megan were part of the collaboration working group, I attended the group focused on advocacy, rights and representation.
Alongside fellow members of the rare disease community, we discussed how patients can be better represented and included in decisions that affect them.
My main focus in these discussions was to make sure the role of patient groups was also considered, including how they can be better supported and compensated for the knowledge, expertise and leadership they bring to the wider community. This is something we’re also exploring through our current Rare Insights Study.
The Summit itself was a really interesting and informative day. It was great to hear about the discussions, principles and proposals coming out of the other working groups too, covering areas ranging from data to research. Having not been to a non-Beacon-led event in quite some time, it was also lovely to get out, catch up with familiar faces and make some new connections.
We’re looking forward to seeing how this work progresses and what comes next for rare disease policy in the UK.
Dr Rick Thompson – CEO
I’m sure no one would be surprised to hear that a large part of a charity CEO’s job is to think about funding – how do we source the income needed to sustain our projects and benefit the rare disease community? It isn’t necessarily exciting, but it is vital to the success and impact of a charity like Beacon.
Well, I’ve spent a good amount of time this year working on plans and proposals to keep Beacon’s work going – in particular to extend and develop our work in the LifeArc Translational Centres for Rare Disease Project. While this project will run for five years, Beacon’s role in the hub, which supports the work of the Kidney, Mitochondrial, Respiratory, and Clinical Trials centres, was only funded for two years initially.
Subsequently, I’ve been working to develop a strong plan and funding proposal to extend that work until September 2029.
I’m pleased to say that we learned that this was successful at the start of September! This means that Beacon will be working with LifeArc on the project for another 3 years.
Over that time, we’ll be running three annual events – including academic training, a PPIE event, and a patient group training workshop.
I’m thrilled to be able to continue this work – and you can get involved yourself by joining out first patient group workshop held as part of this project, “Better together: Patient group collaboration” on the 11th November – get your tickets now!
Megan Burley – Senior Scientific Projects Officer
My Q3 highlight has got to be the REMEDi4ALL Hackathon! Not only because I got to spend the week in sunny Montserrat, just outside Barcelona, but because it’s one of my favourite trainings to help organise and deliver.
This year, we had three teams, each given a different rare disease and the challenge of identifying a drug repurposing candidate and developing a plan to take it forward. It’s an intense week, with participants exploring everything from computational approaches and safety profiles to regulatory considerations and routes to market.
I delivered a plenary on the importance of patient engagement in drug repurposing, looking at different methods and approaches for involving patients meaningfully throughout the process.
The groups then had the opportunity to speak directly with patient representatives from their disease areas, learning about their day-to-day experiences, what outcomes matter most to them, and what they would want to see from a treatment.
For me, this is one of the best parts of the Hackathon – seeing patient input shape the repurposing ideas and approaches.
The week finished with everyone pitching their candidates, and the winning team will be heading to iDR27 as their prize, so it will be great to catch up with them again.
Despite the full-on week, I got to catch up with my REMEDi4ALL team members, celebrate Rick’s birthday, and watch the groups battle it out in a very entertaining game of Werewolf. It was such a great week, and a real reminder of why I love being part of this project.
Madeleine Chamberlain – Digital Content Officer
Q3 has flown by! From uploading some brilliant guest blogs to promoting our brand-new study, I’ve really enjoyed the past few months here at Beacon.
As Digital Content Officer, I have been involved in the promotion of the Rare Insights Study on our website and social media channels. I’ve loved getting the study the team has been working so hard to create out into the world and see people engage with it.
I was also excited to be featured in Rare Revolution Magazine as part of my work in the study promotion. I was buzzed to see my name on an article and to be able to reach more patient group leaders with our study through the piece.
And of course, I couldn’t wrap up Q3 without mentioning our celebrations for Jeff, Head of Advocowcy, for his fifth birthday. Creating his party reel was so fun – he had a blast!
Elizabeth Proctor – Senior Events Officer
Q3 has been a whirlwind, with so many highlights to choose from.
As you may have seen, we have been busy behind the scenes with our Rare Insights Study – you can find out more and take part here!
As part of this project, it has been a privilege to lead the organisation and delivery of three focus groups to support the survey.
Each session dived into different aspects of leading a patient advocacy group, including personal experiences, challenges and opportunities for growth. Connecting with the community is my favourite part of my role at Beacon, so this was an powerful opportunity.
Another highlight has been attending an Impact Day, kindly organised by Pilotlight. Over the course of a day, myself and Rick worked collaboratively with a team of volunteers from Costello Medical on a brief to improve our operational practices.
It was brilliant to have access to the team’s expertise in tackling this brief, and it’s amazing how much a team can achieve so quickly when working together!
Madeleine Still – Senior Patient and Scientific Engagement Officer
My highlight from Q3 was facilitating the first focus group for our Rare Insights Study, where we discussed the many challenges behind running a Patient Advocacy Group.
I feel incredibly grateful to everyone who attended and shared their thoughts and feelings on this topic, and I was really touched by everyone’s openness and honesty.
The insights from this focus group will be essential for our report for funders, policymakers, industry and the wider rare disease community, which will be used to enhance recognition, support and resources for patient groups.
Kate Elliot – Senior Operations Officer
As Senior Operations Officer, my principal role is in relation to the core functioning of the office and organisation on a day-to-day basis. So, for me, having the opportunity to be involved in the project or programmatic work of the organisation is always a highlight, as this gives me direct interaction with our rare community.
This year, I have been a part of the Beacon team offering support on the Patient Group Mentoring programme, where I am the first point of contact for a group of mentor/mentee pairs who are taking part.
One of the mentees I help support on the programme this year, is Jonathan Bracey from the MVA Society, and I was really happy to be invited to attend their first Research conference held at Great Ormond Street Hospital, at the Zayed Centre for Research this month.
Jonathan and the team did a fantastic job of putting together a really engaging day, that sparked passionate and thought-provoking discussion and debate, from research scientists and clinicians to patient groups.
It was also great to see Jonathan’s mentor, Svetlana, in attendance offering support, as well as another Beacon Mentoring programme alumni, Mel Dixon, who Jonathan had asked to give a talk on the day, about all the amazing work she has been doing with her patient support group charity, Cure DHDDS.
I came away from the day feeling really inspired by all the individuals around me and even more so by what can be achieved when the rare community comes together to push forward for a united cause.
That’s a wrap on Q3!
We hope you’ve enjoyed catching up with us here at Beacon.
Look out for our final quarterly round up of the year after the festive season!
