As we come to the end of a fantastic year at Beacon, this is a great time to reflect on what we’ve got up to over the past 12 months.
Join us as we look back on our highlights from 2023, and what a year it’s been!
In 2023 we continued to deliver our mission of building a united rare disease community with patient groups at its heart.
Throughout the year we delivered 7 webinars, 2 masterclasses, 2 workshops and 2 RareChats, to 100 incredible patient organisations.
By providing a variety of interactive and informative sessions, our patient group training champions and empowers rare disease patient groups at every stage of their journey.
We can’t wait to continue this in 2024!
Here’s what our patient group training attendees say:
Crafting compelling communications masterclass attendee
“The room was full of wonderful advocates and it was a very ‘safe space’ to ask questions and practice the techniques that Andy was teaching us.
Both Andy and Hannah were clear about what would be covered during the day and kept us on track! Timings were spot on! Plenty of time for practice and discussions and getting to know each other through the breaks which was really important!”
Delve into digital fundraising workshop attendee
“I enjoyed meeting other people from the rare disease charity communities and have made lots of valuable connections”
We held not one, but TWO showcases this year!
The showcase series shine a light on the latest advancements in the rare disease space.
The Cambridge Rare Disease Showcase took place in June, we had lightning talk speakers deliver insightful presentations and delegates joined us from across the rare disease community. It was our biggest Cambridge Showcase to date!
We then held the London Rare Disease Showcase in November, our biggest in-person Beacon event, with over 185 delegates. Our incredible speakers took to the stage to share their ideas, projects and personal stories. Lots of meaningful discussions were had and many new connections made.
Get an insight from our delegates:
Cambridge Rare Disease Showcase delegate
“The Beacon team always create friendly, relaxed and well-run events that really facilitate conversations and make everyone feel valued.”
London Rare Disease Showcase delegate
“I caught up with various contacts & I /my patient group was asked by various other charities to present, help them, get involved in different initiatives – but also offered great contacts and ideas and various help & collaborations throughout the day – it was just so worthwhile attending! THANK YOU BEACON!”
Our team got bigger!
In 2023 two of our longest serving team members, Phil and Laura sadly left the charity.
But, our team grew as we welcomed four new staff members.
Get to know them more by clicking on their names to read their blogs!
- Sophie Ellis – Projects Officer
- Niamh Antrobus – Communications Officer
- Abby Stock-Duerdoth – Scientific Projects Officer
- Emma Damian-Grint – Fundraising Manager
We shared even more resources on the hub!
We now have 281 users on the Resouces Hub!
Our top completed resources this year are:
- Collaborating with medical professionals
- What is health econimics?
- Utility values and QAL’s for health economic models
- Working from home
- Recruiting and managing trustees
- Working with industry
Don’t miss out on even more exclusive content next year – sign up for free now!
Our role in REMEDi4ALL
The first year of the REMEDi4ALL project has been a huge success.
Abby joined the team in September to help support our work on REMEDi4ALL and has already proved to be a valuable member of the team.
Beacon’s role within the REMEDi4ALL consortium is to:
- Support and ensure patient centricity within drug repurposing projects
- Help train the current and next generation(s) of drug repurposing stakeholders
In the first year we have been part of ensuring REMEDi4ALL upholds it’s patient centric ethos in a number of ways.
This includes, supporting patient champions (patient groups or individuals with lived experience of a disease), developing gold standards for patient engagement in repurposing research for all stakeholders, forming & supporting Patient Advocacy Groups (PAGS) across 2 of the 4 demonstrator projects, and acting as the trusted voice and accountability guardians of patient centricity within the consortium, alongside EURORDIS.
We held a Curriculum Setting Meeting in Barcelona with our colleagues at EURORDIS where we began planning our new repurposing curriculum along with representatives from across the breadth of the drug repurposing ecosystem.
We plan to develop an ambitious curriculum of e-learning, in-person, needs-led training for ALL stakeholders alongside some alternative learning resources such as a podcast and a mentoring programme.
The team have been busy helping plan and organise the first International Conference on Drug Repurposing which will be held in Barcelona in March 2024.
We hope you enjoyed reading our highlights from 2023.
We’d like to say a huge thank you for all of your support over the past year, we can’t wait to see what 2024 has in store!
