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!

Love,

The Beacon Team

Over the last 10 years, Beacon for rare diseases has achieved:

Patient Group Training

38 workshops

27 webinars

Patient Group Mentoring Programme

28 countries

108 mentees

103 mentors

Rare Disease Showcase Series

6 cities

2 virtual

1 international

Drug Repurposing for Rare Diseases

9 conferences

1 virtual

The Student Voice Prize

8 overall winners, 19 runner ups and 27 published essays

Winning essays have been viewed over 20,837 times with 107 citations between them!

Rarely Heard

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.

Summer 2012

Nick and Tony came up with the idea of Findacure and established a board of trustees.

2012

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!

January 2014

New year = new projects!

We ran our first-ever workshop “How to access funding as a small patient group”

October 2014

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 of our summer volunteer, Rhys!

Feb 2015

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.

April 2015

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.

June 2016

We hosted our first-ever sky dive that raised £3,200!

2016

We hosted a Gala Dinner to raise money for Findacure and celebrate our successes to date.

A photo of Findacure's Trustees in 2015: Tony Hall, Vice Chair, Julie Walters, Former Trustee, Nick Sireau, Chair of Trustees, and Flóra Raffia, Former CEO

2017

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!

2019

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.

May 2020

We took The Empowerment Programme completely online and hosted our first-ever online workshop ‘Setting yourself up for Fundraising Success’

Nov 2021

We hosted our first-ever, large-scale online event: The Virtual Rare Disease Showcase!

February 2022

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!

October 2013

Enter our first employee Flóra as our Project Manager

Pssst! She went on to become our Executive Director!

March 2014

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!

Nov 2014

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.

March 2015

We ran our first-ever conference on drug repurposing and fundamental diseases!

January 2016

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.

Nov 2016

We established our first-ever Empowerment Advisory Committee to ensure that our services were designed to benefit patient groups!

2016-2017

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.

2018

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.

March 2020-21

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!

Oct 2021

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!

2021

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!

Sept 2022

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.

Staff timeline

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.

2012

Dr Nick Sireau

Dr Tony Hall

Co-founders

2013

First employee

Flóra

Nov 2014

Louisa

May 2015

Rick Thompson

Sept 2015

Libbie

June 2016

Mary Rose

Sept 2017

Katie

April 2019

Taryn

Nov 2019

Laura

Nov 2019

Philippa

July 2020

Blayne

Feb 2021

Hannah

Jan 2022

Sophia

Sept 2022

Faith

Oct 2022

Will

Oct 2022

Eve

Nov 2022

Chloe

Head of Advocowcy

Jeffrey SirMoo