Our 2024 highlights!

Dec 13, 2024

As we come to the end of 2024, it’s a great time to reflect on an incredible year at Beacon.

We’re proud of the progress we’ve made in supporting the rare disease community, and we’re excited to share some of our highlights with you.

Lets take a tour of what we got up to in 2024!

Throughout 2024, we delivered 10 webinars, 3 masterclasses, 2 workshops and 3 RareChats!

This year our training covered a diverse range of topics, including fundraising, rare disease research, genetics and using AI.

We’re excited to be continuing to support the rare disease community with more impactful sessions in 2025!

Hear from our patient groups!

Building Rare Resilience workshop attendee

“Thank you to Beacon and RareMinds for setting this up, it came at a time when I have been struggling and I didn’t know how to express how I was feeling & understand it.

These 3 sessions have changed that around for me so a huge thank you.”

Decoding Diagnostics webinar attendee

“Thank you – very useful series on Diagnostics. Well done Beacon.”

We held our biggest Cambridge Rare Disese Showcase to date!

Man smiling at event

This year we hosted the Cambridge Showcase at the Clayton Hotel. We had 92 delegates join us for an evening of celebrating innovation and success in the rare disease community.

This event featured an insightful lightning talk session; welcoming speakers from varied backgrounds in industry and patient advocacy. These talks covered topics such as using AI in the development of rare disease therapies, personal advocacy stories and developing a rare disease research network.

Missed the Cambridge Showcase?

Here’s what our delegates thought:

100% of attendees would recommend this event

98% of attendees said the Showcase was worthwhile to attend

85% of attendees said they felt a greater sense of belonging to the rare disease community as a result of attending this event

98% of attendees said our speakers’ presentations were interesting and relevant

We co-hosted an international drug repurposing conference, #iDR24!

In 2024, we proudly co-hosted an international conference with REMEDi4ALL, focusing on advancing drug repurposing for rare diseases. This event brought together 230 attendees and over 50 speakers in the drug repurposing field, to share ground-breaking research and foster collaboration.

The conference also featured a rare disease pathway – one of three conference streams, including cancer and methodologies – with 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.

We are excited to be building on this success in 2025 with the next conference taking place in Amsterdam!

Two new team members joined us!

In May 2024 we welcomed our new Projects Officer, Gabriel Ortega Toledo and Events Officer, Elizabeth Proctor to the team.

Get to know them better by reading their introductory blogs.

Photo of Gabriel holding up a sign saying "I support drug repurposing because it can bring medicines to people faster".
Photo of Elizabeth holding up a sign saying "I love Beacon because they united the rare disease community".

The Resources Hub wrapped!

The Resources Hub is our free e-learning platform that is full of exclusive content to guide patient groups through every stage of their rare disease journey. 

The hub continued to grow during 2024, and we now have over 525 users on the platform!

 

Our top courses this year were:

1.  Introduction to genetics

2. Collaboration with medical professionals

3. Working with industry

4. Drug Repurposing

5. Understanding the UK Rare Disease Framework

Our role in REMEDi4ALL

It has been a really exciting year for Beacon within the REMEDi4ALL project.

Working with our close colleagues and partners at EURORDIS, our biggest challenge and achievement was launching the REMEDi4ALL Repurposing Academy – a suite of training in different formats including in-person events for patient groups and representatives, alongside training events for academics.

2025 will see the fruits of our planning with 5 live training events planned so far, and more to come!

Thank you for taking the time to read our highlights from 2024.

From all of us at Beacon, we’d like to wish you a Merry Christmas and a Happy New Year!

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