’22 went by in the blink of an eye!

by | Jan 6, 2023 | Blog

Can we really be writing an end-of-year blog?! It feels like yesterday that we rebranded and returned to face-to-face events!

Rebranding from Findacure to Beacon: for rare diseases

We have accomplished (and celebrated!) so much in the past 365 days of 2022. It was following intensive focus groups with our Patient Group Engagement Committee that our charity and board of trustees made the exciting decision to rebrand. We kickstarted 2022 by rebranding from Findacure to Beacon: for rare diseases in February to better reflect our work and mission.
Why did we choose the name Beacon? We want to be a source of light, hope and guidance to our beneficiaries. Our mission is to build a united rare disease community with patient groups at its heart. We’ll be there to guide our patient group leaders through their personal rare journey, so they can accomplish their specific goals, whatever they may be.

Our year in review

The final year of our community fund grant wrapped up this year. During this final year of funding, we’re proud to have supported 238 patient groups through our Empowerment Programme 54 of which never engaged with us before!

We’re thrilled to say that we have either matched or exceeded the majority of our targets for 2022. Check out a few of our proudest outcomes!

100% of patient groups have progressed on our mentoring programme in the final year of our community fund grant with 75% of patient groups having achieved significant progress!

98% of patient groups agreed that our workshops and webinars were worthwhile to attend with 96% saying that they would want to attend future ones!

Don’t just take our word for it! See what our beneficiaries had to say:

“I really enjoyed the sessions, over the last couple of years I’ve picked up bits & bobs & the last 3 days had brought all that together for me. So thank you to you & the team for all you do, I’m sure it’s helped others as well as myself.”
Understanding Access and Reimbursement workshop attendee

“You did a fantastic job. You’ve broadened my horizons. Also, I just wanted to say thank you for all you are doing and continue to do. Everything I have been able to participate in by Beacon (Findacure) has been very enriching, even if I didn’t know I needed it or had slightly different expectations.”
Engaging and Involving your Community workshop

“My thanks go to you, your colleagues and guest speakers for all the time and effort involved in planning and delivering this event. The webinars were extremely informative and it was especially useful to have the insight of speakers from the relevant government agencies. I very much hope that Beacon continues to provide such high-quality opportunities in the future.”
Understanding Access and Reimbursement workshop attendee

Return of face-to-face events

The long-awaited return to face-to-face events happened in 2022! The return to face-to-face trainings and events was cautious but necessary.

At our first in-person workshop since 2020, 88% of attendees agreed that the chance to meet other patient advocates face-to-face was beneficial with 81% saying that our return to face-to-face training was well-timed!

The Cambridge Rare Disease Showcase was our first in-person event since 2020 and we were delighted with the atmosphere and positive feedback. You can relive the Cambridge Rare Disease Showcase here!
The fun didn’t stop there either! On the 10th of October, we held our ninth annual Drug Repurposing for Rare Diseases Conference at America Square Conference Centre in London. This was our first in-person conference since 2020. Our programme featured big names who dared to believe in drug repurposing and are bringing repurposed medicines to patients at an accelerated rate, such as Cancer Research UK, MHRA, NHS England and LifeArc. You can relive Drug Repurposing for Rare Diseases 2022 here!
If this wasn’t all exciting enough, we travelled to Barcelona for the in-person 13th World Orphan Drug Congress Europe in November. We were thrilled to not only be a Supporting Partner of the event, but also an exhibitor and speaker! This year was the first time that our team members Hannah, Eve and Philippa attended the conference, so read their review of the event here!

What a phenomenal return to in-person events!

Launch of The Resources Hub

As we continued evolving our service offerings and events, it became apparent that our e-learning resources needed an overhaul. We took our E-Learning Portal which had served our charity and rare community since 2015 and transformed it into our newly launched Resources Hub.

We wanted to produce a new learning platform on WordPress that would be more engaging, user-friendly and accessible. It was no small task, but we officially launched the Resources Hub and saw 68 signups from patient group leaders, with 50 of those signups coming in the first month of release!

What is the Resources Hub?

The Resources Hub is a 100% free and accessible e-learning platform for rare disease patient groups, advocates and patients. The Resources Hub centralises trainings from across our entire portfolio and contains comprehensive guides, videos and written courses that are tailored to the needs of rare disease patient groups. Our hub is free and accessible from anywhere!
Best of all, the Hub allows patient groups to further their learning on topics of interest in a learning style that suits them. Our Resources Hub has been designed to guide patient groups through their rare journey, so they can reach their advocacy goals. Whether you’re an individual, a small group of volunteers or an established charity, the Resources Hub can help you to grow in the following eight areas:
•  Building Connections
•  Drug Repurposing
•  Communications
•  Fundraising
•  Data
•  Supporting Community
•  Patient Group Development
•  Research & Drug Development

REMEDi4ALL transforms our reach and impact

It may be no surprise that while our reach and impact grew, so did our team. We are now a proud team of 10 with the introduction of Faith, Eve, William and Chloe! Learn more about our new team members now!

•  Meet Faith
•  Meet Eve
•  Meet Will
•  Meet Chloe (Intro blog coming soon!)

The catalyst for the growth of our team was joining the REMEDi4ALL drug repurposing project. REMEDi4ALL is a new flagship EU-funded research initiative to drive the repurposing of medicines across the UK and Europe. The REMEDi4ALL project will repurpose medicines to treat some of the world’s rarest and most neglected conditions, such as rare genetic diseases, poorly understood cancers and infectious diseases.
By joining this EU/UK consortium, our reach and impact extended into Europe. We hired Eve and Chloe to lead this project alongside our CEO Rick to lead the consortium’s educational programme on drug repurposing to support the international drug repurposing community.

You can learn more about our role within REMEDi4ALL here!

Our 10th birthday timeline

Arguably the highlight of the year was celebrating our 10th birthday. Our charity officially turned 10 years old on 7 November 2022!

From starting out as Findacure in 2012 to evolving to Beacon in 2022, our charity has grown, changed and adapted to match each passing year. We’ve welcomed countless new collaborations and hosted an abundance of new trainings and events to support the patient groups who look up to us for advice, guidance and support.

There is no Beacon without your generosity, friendship and support. Thank you for believing in us.

Before we look ahead to 2023, take a moment to reflect on how far our charity has come. Revisit our milestones and achievements from the last decade by viewing our 10th birthday timeline and prepare to help us empower more rare disease patients in 2023 and beyond!