Beacon turns 10 years old!
This November marked the tenth anniversary of Beacon for rare diseases on 7 November 2022!
What a journey the last decade has been. From starting out as Findacure in 2012 to rebranding as Beacon for rare diseases in 2022, we’ve seen our rare disease charity grow and change with the years.
Our team has now grown to 10 (ironic we know in our tenth year!) and welcomed a host of new collaborations to further the support we offer patient groups and the rare community.
Join us as we reflect back on an exceptional decade by going down memory lane. Revisit the charity’s highlights and members of staff who were and have been transformational to our cause.
Thank you for joining us on this crazy ride and believing in and supporting us from the start.
There is no Beacon without your generosity, support and friendship.
Cheers to the next 10 years and beyond!
The Beacon Team
Over the last 10 years, Beacon for rare diseases has achieved:
8 overall winners, 19 runner ups and 27 published essays
Winning essays have been viewed over 20,837 times with 107 citations between them!
Season 1 saw 681 plays and 109 listeners across both Spotify and Apple podcasts
Streamed international: Australia, Romania, USA, India, Mexico, Hong Kong and more!
Bonus Student Voice Prize stat
We’ve paired over 170 rare disease patient groups with medical students to give students a first-hand account of what it’s truly like to live with and manage a rare condition.
Just like you, we haven’t been on our rare journey alone. We’ve met and worked with countless rare disease advocates from around the world who have advanced our offerings, insight and experiences over the last 10 years.
Allow us to take you back to the very beginning – the founding of Findacure in 2012 – to see how far we’ve come. Follow along as we progress through the years and smile at what we’ve accomplished together as one, rare family.
Our achievements are your achievements.
Thank you for a decade full of growth, advancement and incredible memories.
Nick and Tony came up with the idea of Findacure and established a board of trustees.
Nick gave a TED Talk about on his son’s ultra-rare disease alkaptonuria (also known as AKU or Black Bone Disease) and why he founded Beacon (then known as Findacure) in the first place: to give patient groups the tools needed to form, grow and professionalise!
New year = new projects!
We ran our first-ever workshop “How to access funding as a small patient group”
We launched the first-ever Student Voice Prize essay competition!
Rosemary Grain won w/ her essay ‘How has the study of rare diseases influenced our knowledge of more common diseases?’
Fun fact: The competition was created by one of our summer volunteers, Rhys!
We hosted the Cross Your Own Oceans event to connect young people living with rare diseases so they could share a trip and common experiences faced when living with a rare condition as a youth.
We launched our online E-learning portal!
Our E-learning portal walked so our brand-new Resources Hub could run
The E-learning Portal saw strong growth, expanding from 94 users to over 290 in 2021, before it was replaced by our Resources Hub.
We hosted our first-ever sky dive that raised £3,200!
We hosted a Gala Dinner to raise money for Findacure and celebrate our successes to date.
We walked into 2017 ready to host our first-ever showcase ‘The Midlands Rare Disease Showcase’
The team travelled up to Birmingham and gathered the rare community together to celebrate the innovative rare disease projects taking place across the UK!
We secured our first large, multi-year grant from The National Lottery Community Fund to support our unified patient group empowerment programme!
The Cambridge Independent shared the story back in July 2019.
We took The Empowerment Programme completely online and hosted our first-ever online workshop ‘Setting yourself up for Fundraising Success’
We hosted our first-ever, large-scale online event: The Virtual Rare Disease Showcase!
We officially rebranded as Beacon for rare diseases at The International Rare Disease Showcase!
We changed our name to better reflect our work and mission.
We want to be a source of light and hope for all those living with rare conditions.
No one should face their rare journey alone.
Nov 7, 2012
Nick and Tony registered Findacure as an official charity!
Enter our first employee Flóra as our Project Manager
Pssst! She went on to become our Executive Director!
The “firsts” just kept coming!
In March 2014, we ran our first-ever scientific conference “First Scientific Workshop on Fundamental Diseases”
Speakers included Prof Tim Cox, Prof Jim Gallagher, Prof Eamonn Maher and more!
We launched the first-ever peer mentoring programme!
Our first-ever cohort consisted of 17 mentees and 15 mentors from 4 countries, including the UK.
We ran our first-ever conference on drug repurposing and fundamental diseases!
Our co-founders published The Patient Group Handbook (edited by Tony Hall and Nick Sireau) for patient groups that are looking to get involved in research and drug development.
We established our first-ever Empowerment Advisory Committee to ensure that our services were designed to benefit patient groups!
Our CEO Dr Rick Thompson conducted a Rare Disease Drug Repurposing Social Impact Bond (RDDR SIB) to propose an innovative funding source for rare research in the UK that could deliver a low-cost drug to patients and save the NHS money.
We joined MCDS-Therapy!
The MCDS-Therapy consortium is comprised of 11 international partners, who are working to develop the first therapy for the ultra-rare bone disease, metaphyseal chondrodysplasia type Schmid (MCDS). We are running a clinical trial as part of the project to test whether the drug carbamazepine can be repurposed to treat MCDS patients.
We’re proud to have supported the rare community throughout COVID-19 with tailored trainings designed to meet our patient groups’ emerging needs.
Our service offering, RareChat, was even launched in response to help groups network, break isolation and collaborate!
A HUGE accomplishment was our co-founders Dr Nick Sireau and Dr Anthony Hall being named by The Prime Minister as Points of Light for driving awareness, research and treatment into rare diseases!
Daniel Zeichner MP for Cambridge presented the award at our office!
We launched Season 1 of The Rarely Heard podcast with Same but Different to discuss rare diseases and mental health.
Shelley Simmonds’ story about Duchenne Muscular Dystrophy was the most listened to episode!
We joined the ground-breaking REMEDi4ALL drug repurposing project!
We joined 23 other EU and UK organisations to help repurpose medicines for those living with some of the world’s rarest and most neglected conditions across the UK and Europe.
November 7, 2022
What a journey the last decade has been!
From Findacure to Beacon to a team of now 10 (ironic on our 10th year!) and new collaborations – WOW!
Thank you for joining us on this crazy ride and believing in/supporting us from the start.
Cheers to 10 more years of ensuring that no one faces their rare journey alone.
View the faces behind Findacure and Beacon for rare diseases.
Each member of staff has left his or her mark on the charity – both past and present!
It’s because of them that we’ve reached our tenth anniversary on such a promising high. It’s with their steadfast determination, drive and hope for a better tomorrow that we close one chapter and begin another. No one should face their rare journey alone and we won’t quit until that happens.
Dr Nick Sireau
Dr Tony Hall
Head of Advocowcy