Beacon is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. Our patient group trainings help these often small and voluntary organisations to form, grow, and professionalise. It is through our events and trainings that patient groups have the opportunity to connect and collaborate with others across the rare disease space. At Beacon, we believe that no one should face their rare journey alone.
Beacon is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. Our patient group trainings help these often small and voluntary organisations to form, grow, and professionalise. It is through our events and trainings that patient groups have the opportunity to connect and collaborate with others across the rare disease space. At Beacon, we believe that no one should face their rare journey alone.
Our vision
A world in which no one faces their rare journey alone.
Our mission
To build a united rare disease community with patient groups at its heart.
Our vision
A world in which no one faces their rare journey alone.
Our mission
To build a united rare disease community with patient groups at its heart.
Read more
Living with a rare disease can be an extremely isolating experience; both for patients and their families. Rare patients often fall victim to misdiagnosis, delayed treatment, poor care coordination and a lack of support. It is all too common for those diagnosed with a rare condition to be given a printout from Google, and be told to go home and deal with it. Rare disease support groups are key to breaking this isolation.
Rare disease patient advocacy groups help patients and families live with and manage their rare condition. Patient groups not only support the mental and physical health of their community, but also act as the community’s voice. These groups fight tirelessly to gain better access to treatments for their community. They guide families through the process of transitioning from childhood to adult care. They advocate for greater awareness of rare diseases amongst healthcare professionals. Whether these groups are creating patient leaflets to help others live with the condition or are speaking in front of government policymakers to bring about sustainable change, they are uplifting the rare patients and families they support.
A rare journey may be long, hard and complex, but know that Beacon will help guide you through every turn along the way. By working in partnership with patient organisations and other rare stakeholders, we are building a united community that is transforming the rare patient experience. We create opportunities for rare disease support groups to make connections with others in the space to advance care, research and treatment as one, united community. At Beacon, we are with you, for you and breaking rare disease isolation alongside you. We are in this together. You are never alone!
Read more
Living with a rare disease can be an extremely isolating experience; both for patients and their families. Rare patients often fall victim to misdiagnosis, delayed treatment, poor care coordination and a lack of support. It is all too common for those diagnosed with a rare condition to be given a printout from Google, and be told to go home and deal with it. Rare disease support groups are key to breaking this isolation.
Rare disease patient advocacy groups help patients and families live with and manage their rare condition. Patient groups not only support the mental and physical health of their community, but also act as the community’s voice. These groups fight tirelessly to gain better access to treatments for their community. They guide families through the process of transitioning from childhood to adult care. They advocate for greater awareness of rare diseases amongst healthcare professionals. Whether these groups are creating patient leaflets to help others live with the condition or are speaking in front of government policymakers to bring about sustainable change, they are uplifting the rare patients and families they support.
A rare journey may be long, hard and complex, but know that Beacon will help guide you through every turn along the way. By working in partnership with patient organisations and other rare stakeholders, we are building a united community that is transforming the rare patient experience. We create opportunities for rare disease support groups to make connections with others in the space to advance care, research and treatment as one, united community. At Beacon, we are with you, for you and breaking rare disease isolation alongside you. We are in this together. You are never alone!
How are we building a united rare disease community with patient groups at its heart?
Although rare diseases are individually unique, the challenges that they pose are quite common. Medical understanding, knowledge and research of rare diseases are limited. This lack of understanding sadly results in delayed diagnoses, misdiagnoses and years of fighting to be heard for patients and their families. At Beacon, we recognise these common threads and listen to the rare patient experience. We help all those who engage with us to embark on their personal rare journey with hope, confidence and guidance.
Our free patient group trainings provide the direction needed to form, grow and professionalise a rare disease support group. Our trainings encourage patient organisations to build connections with other advocacy groups and rare stakeholders to promote collaboration. It is through collaboration that patient groups learn and grow from each other.
We deliver projects that connect rare disease stakeholders from around the world to unite and build our rare community. Our team prides itself on delivering high-quality, professional events that make everyone feel welcome and heard. Our events highlight excellence within the rare disease field and prompt discussion, reflection and action. The patient voice is always at the forefront of our work. We consistently promote the role patient groups play in research and corporate collaborations. We also aggressively pursue the tremendous potential drug repurposing offers to millions of untreated rare disease patients.
We have seen the positive impact rare disease support groups have on their community. Through upskilling these groups, we are ushering in change and breaking isolation. We have achieved all this by:
How are we building a united rare disease community with patient groups at its heart?
Although rare diseases are individually unique, the challenges that they pose are quite common. Medical understanding, knowledge and research of rare diseases are limited. This lack of understanding sadly results in delayed diagnoses, misdiagnoses and years of fighting to be heard for patients and their families. At Beacon, we recognise these common threads and listen to the rare patient experience. We help all those who engage with us to embark on their personal rare journey with hope, confidence and guidance.
Our free patient group trainings provide the direction needed to form, grow and professionalise a rare disease support group. Our trainings encourage patient organisations to build connections with other advocacy groups and rare stakeholders to promote collaboration. It is through collaboration that patient groups learn and grow from each other.
We deliver projects that connect rare disease stakeholders from around the world to unite and build our rare community. Our team prides itself on delivering high-quality, professional events that make everyone feel welcome and heard. Our events highlight excellence within the rare disease field and prompt discussion, reflection and action. The patient voice is always at the forefront of our work. We consistently promote the role patient groups play in research and corporate collaborations. We also aggressively pursue the tremendous potential drug repurposing offers to millions of untreated rare disease patients.
We have seen the positive impact rare disease support groups have on their community. Through upskilling these groups, we are ushering in change and breaking isolation. We have achieved all this by:
Supporting patient groups to form, grow and professionalise
Empowering patient groups to provide emotional and practical support to their communities
Facilitating connections and collaborations to help grow and strengthen the rare disease community
Helping patient groups find a place at the heart of research so that they can ensure better outcomes and improve access
Increasing urgency amongst professionals and the general public to care about rare diseases
Charity history: Our journey
Findacure was founded in the summer of 2012 by Nick Sireau and Anthony (Tony) Hall. Nick’s two sons were born with the ultra-rare genetic condition alkaptonuria (AKU or Black Bone Disease). The global prevalence of AKU is 1 in every 250,000 people. Those living with AKU can experience black bones and urine, early-onset severe osteoarthritis, multiple joint replacements and serious heart problems. When Nick’s sons were diagnosed, a treatment for AKU didn’t exist. He quit his job to run the AKU Society in search of a treatment and a way of providing support for other families affected by the disease. The AKU Society set a model for others to follow when establishing a patient support group for a rare condition. Nick knew that the rare disease community needed an organisation that could give patient groups the tools needed to form, grow and professionalise.
Nick met Tony soon thereafter. Tony, who is an expert in orphan drug development, was particularly interested in establishing an organisation that could build sustainable models for not-for-profit, rare disease drug development. He realised the need for a non-profit approach to improve patient health, while not breaking the NHS bank. In 2012, Nick and Tony joined forces to set up the rare disease charity, Findacure!
Our milestones
Over the past decade of operating as Findacure, our rare disease charity has reached many impressive milestones. Join us as we look back on where we have been and discover where we are going. We look forward to writing our next chapter alongside you, so those affected by a rare condition can walk in the light of progress and change.
Summer of 2012
Nick and Tony came up with the idea of Findacure and established a board of trustees
2012
Nick gave a Ted talk about AKU and Findacure
January 2014
Ran our first-ever workshop entitled “How to access funding as a small patient group”
November 7, 2012
Nick and Tony registered Findacure as an official charity
October 2013
We hired our first employee – Flóra as Project Manager
March 2014
Ran our first-ever scientific conference entitled “First Scientific Workshop on Fundamental Diseases”
October 2014
We launched the student essay competition “The Student Voice Prize”
March 2015
Ran our first-ever conference on drug repurposing entitled “Drug Repurposing for Fundamental Diseases”
2016-2017
Conducted our Social impact bond development project
November 2014
We launched the first-ever peer mentoring programme
April 2015
We launched our online E-Learning portal
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
2017
Hosted our first showcase named “The Midlands Rare Disease Showcase 2017”
2020-2021
Supported our community throughout COVID-19 with tailored webinars and workshops designed to meet their emerging needs during the 2020-2021 pandemic. Our new service offering, RareChat, was launched in response to the pandemic to help groups network, break isolation and collaborate during the community’s toughest years to date.
2019
Secured our first large, multi-year grant provided by the National Lottery Fund to support our unified patient group empowerment programme
February 2022
Findacure rebrands as Beacon!
We are fully dedicated to building a united rare disease community with patient groups at its heart. Help us write our journey’s next chapter by getting involved in our mission today. We’ll happily walk beside you the entire way.
Charity history: Our journey
Findacure was founded in the summer of 2012 by Nick Sireau and Anthony (Tony) Hall. Nick’s two sons were born with the ultra-rare genetic condition alkaptonuria (AKU or Black Bone Disease). The global prevalence of AKU is 1 in every 250,000 people. Those living with AKU can experience black bones and urine, early-onset severe osteoarthritis, multiple joint replacements and serious heart problems. When Nick’s sons were diagnosed, a treatment for AKU didn’t exist. He quit his job to run the AKU Society in search of a treatment and a way of providing support for other families affected by the disease. The AKU Society set a model for others to follow when establishing a patient support group for a rare condition. Nick knew that the rare disease community needed an organisation that could give patient groups the tools needed to form, grow and professionalise.
Nick met Tony soon thereafter. Tony, who is an expert in orphan drug development, was particularly interested in establishing an organisation that could build sustainable models for not-for-profit, rare disease drug development. He realised the need for a non-profit approach to improve patient health, while not breaking the NHS bank. In 2012, Nick and Tony joined forces to set up the rare disease charity, Findacure!
Our milestones
Over the past decade of operating as Findacure, our rare disease charity has reached many impressive milestones. Join us as we look back on where we have been and discover where we are going. We look forward to writing our next chapter alongside you, so those affected by a rare condition can walk in the light of progress and change.
Summer of 2012
Nick and Tony came up with the idea of Findacure and established a board of trustees
November 7, 2012
Nick and Tony registered Findacure as an official charity
2012
Nick gave a Ted talk about AKU and Findacure
October 2013
We hired our first employee – Flóra as Project Manager
January 2014
Ran our first-ever workshop entitled “How to access funding as a small patient group”
March 2014
Ran our first-ever scientific conference entitled “First Scientific Workshop on Fundamental Diseases”
October 2014
We launched the student essay competition “The Student Voice Prize”
November 2014
We launched the first-ever peer mentoring programme
March 2015
Ran our first-ever conference on drug repurposing entitled “Drug Repurposing for Fundamental Diseases”
April 2015
We launched our online E-Learning portal
2016-2017
Conducted our Social impact bond development project
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
2017
Hosted our first showcase named “The Midlands Rare Disease Showcase 2017”
2019
Secured our first large, multi-year grant provided by the National Lottery Fund to support our unified patient group empowerment programme
2020-2021
Supported our community throughout COVID-19 with tailored webinars and workshops designed to meet their emerging needs during the 2020-2021 pandemic. Our new service offering, RareChat, was launched in response to the pandemic to help groups network, break isolation and collaborate during the community’s toughest years to date.
February 2022
Findacure rebrands as Beacon!
We are fully dedicated to building a united rare disease community with patient groups at its heart. Help us write our journey’s next chapter by getting involved in our mission today. We’ll happily walk beside you the entire way.
Our memberships
At Beacon, no one faces their rare journey alone. That goes for us as a rare disease charity, too! We are delighted to be members of the following organisations, which make it possible to foster collaborations across the rare disease and life sciences sectors.
We would love to add to this list, so please get in touch with our CEO, Dr. Rick Thompson, at rick@rarebeacon.org to discuss potential partnerships and how you can help us to deliver our mission!
Our memberships
At Beacon, no one faces their rare journey alone. That goes for us as a rare disease charity, too! We are delighted to be members of the following organisations, which make it possible to foster collaborations across the rare disease and life sciences sectors.
We would love to add to this list, so please get in touch with our CEO, Dr. Rick Thompson, at rick@rarebeacon.org to discuss potential partnerships and how you can help us to deliver our mission!