Looking back: 1 year on since rebranding from Findacure to Beacon for rare diseases

by | Mar 17, 2023 | Blog

It’s been over a year since we rebranded from Findacure to Beacon for rare diseases. Time moves quickly when you’re optimising a charity’s branding and messaging!

We decided to rebrand our charity to clarify our mission and vision after 10 years of supporting the rare community. Our charity has grown and changed over the past decade, but our core focus has remained the same: to build a united rare community with patient groups at its heart. It became evident to us that we’ve been working to ensure that no one faces their rare journey alone, which is why we’ve made it our vision.

We are here to support patient groups as they navigate their personal rare journey, regardless of what they wish to achieve on it. We are the same team that you’ve come to know but are now rapidly growing to support the community’s needs. Despite the change of name, we had no change of purpose. We are, and have always been, fully dedicated to building a united rare disease community with patient groups at its heart.

This was a “rare” moment in our charity’s history, so join us as we look back on the impact rebranding as Beacon has had on our charity!

Social Media

Since rebranding as Beacon for rare diseases, we’ve seen our social media presence explode!

From July 2021 when we were known as Findacure to February 1, 2023 when we’re known as Beacon:

Our Twitter following grew from 6,546 to 10,635

Our LinkedIn following grew from 884 to 2,989

If this wasn’t exciting enough, since we’ve been known as Beacon for rare diseases on Facebook (from data up to January 1, 2023) we’ve seen 147 new Facebook page likes! In comparison, we received 93 new Facebook page likes (from data from January 1, 2021 to February 1, 2022) when we were known as Findacure. That’s 54 new Facebook page likes since we rebranded, which means we’re engaging with new rare disease patients and patient groups!


Join in the fun by following us on Twitter, Facebook, LinkedIn, Instagram and YouTube at @RareBeacon


Our social media presence isn’t the only channel to have grown!

Our Community Mailing List has been substantially opened and clicked on more now that we’re Beacon for rare diseases than it was when we were known as Findacure.


Navigating over and building a new website for Beacon was no easy feat. It was extremely daunting to rewrite, rebrand and republish a website that conveyed the essence of our charity after almost a decade of being known as Findacure.

We’re thrilled to report that our new website was viewed over 170,000 times more and clicked on over 3,000 times more as Beacon for rare diseases than it was as Findacure!

Although our website’s visibility and engagement have grown, we’re pleased to say that our website’s top-performing pages have remained relatively similar.

•  The Student Voice Prize essay competition
•  What are rare diseases?
•  The Rare Disease Showcase series
•  About us/Meet the Team
•  Drug Repurposing for Rare Diseases Conference
•  Events

The newest addition to our top-performing pages since rebranding as Beacon is why patient groups matter, which makes us extremely happy to see.


International Rare Disease Showcase

If you cast your mind back to when we announced our new name, you’ll remember that we became Beacon at the International Rare Disease Showcase in February 2022!
This online event was the biggest and most ambitious charity event to date. We made our grand announcement in front of:

449 attendees

53 speakers

52 exhibitors

Breaking our attendees down even further, we welcomed:

•  203 patient groups
•  35 healthcare professionals
•  40 academics
•  96 industry representatives
•  15 medical students

Not to mention…

100% of attendees

agreed that the presentations were interesting and relevant

88% stated that

attending the showcase had increased their sense of belonging to a wider rare disease community

98% of attendees

agreed that the showcase was worthwhile to attend

The Cambridge Rare Disease Showcase

We didn’t stop there! We fully embraced our new name and branding post launch with The Cambridge Rare Disease Showcase.

After three years away, we were delighted to announce the return of the Cambridge Rare Disease Showcase at The Clayton Hotel in Cambridge, UK on 6th July 2022. This was our first in-person event since 2020 that allowed attendees to connect, learn and ensure that no one walks their rare journey alone. We were delighted with the atmosphere and positive feedback.
Much like the International Rare Disease Showcase, this was one of our most successful and well-attended Cambridge showcases to date. The evening truly highlighted the enthusiasm and need for in-person events going forward.

We were delighted to welcome 70 delegates to the Cambridge Rare Disease Showcase 2022, bringing together an excellent range of representatives from across the rare disease community, including:

Watch and listen to our CEO Dr Rick Thompson recap the night below. He shares how the Rare Disease Showcase Series began, our aim and hopes for The Cambridge Rare Disease Showcase and why bringing the rare community together has been central to every showcase since.

Drug Repurposing for Rare Diseases Conference

The good times kept rolling as we held our ninth annual Drug Repurposing for Rare Diseases Conference at America Square Conference Centre in London on Monday the 10th of October. This, too, was our first in-person conference since 2020 and we seized the opportunity to highlight the changing landscape of drug repurposing and what it means for rare diseases. We welcomed speakers from across the rare disease world who shared their work and personal experience, including talks on drug repurposing success stories and exciting new projects that are happening in the UK and across the EU.

We are pleased to say that the event was a huge success!

We welcomed 18 speakers and over 100 delegates who came together to learn, make connections and drive drug repurposing in rare diseases forward.

Best of all…

97% of attendees

would recommend the conference

97% of attendees

made meaningful new connections

96% of attendees

felt a stronger sense of belonging to a rare disease community as a result of attending

Rebranding as Beacon for rare diseases wasn’t easy, but what a joy the journey has been. Thank you for believing in our team and charity. Your support and friendship have ensured our charity’s longevity. Because of you, we can begin another decade of serving you and the rare community. Thank you!