Blog
We produce a weekly blog to share what we have been up to alongside the rare community. You’ll often find our team celebrating a work anniversary, welcoming a new team member, thanking our sponsors or writing an event recap on our blog. We thoroughly enjoy writing opinion pieces and summarising the reports that matter most to the rare community.
Our blog doesn’t just exist for us – it exists for you! We welcome guest blog posts from the community to help break the isolation felt by those living with rare disease. If you want to share your lived experiences to help others, visit our Share your story page to learn how to write for our blog.
We hope that you enjoy reading stories from us and the rare disease community!
Please note: We were previously known as Findacure before rebranding as Beacon in 2022.
Latest blogs
Meet Zoë! The reality of living with Dercum’s Disease
Our Digital Resources Manager, Blayne and Senior Communications Officer, Niamh recently met with...
If there’s a Will, there’s a way – good luck on your next adventure!
In August, we said goodbye to our Senior Operations Officer, Will - a huge part of the Beacon...
Rarely Alone: How Zainab Alani is bringing young people with rare conditions together
Our communications volunteer, Madison James interviewed Zainab Alani, a 21-year-old medical...
Eric Lynn: My journey with Granulomatosis with polyangiitis (GPA)
Our latest blog is written by Eric Lynn. He shares his personal journey of living with...
Sydney McFerrin: Living with Ehlers-Danlos Syndrome
This week’s blog has been written by Sydney McFerrin, who lives with Ehlers-Danlos Syndrome. "My...
Alice Smail: former Beacon volunteer on her work in rare disease research
Alice Smail volunteered with Beacon in Summer 2023 while getting her Master’s degree in genomics...
Previous blogs
Our CEO, Rick Thompson reflects on 10 years at Beacon!
In May this year, Beacon’s CEO Rick reached a rare milestone: ten years with a single...
From fragmented to connected: The case for care coordination before the NHS 10-Year Plan
This week’s blog is written by our Digital Resources Manager, Blayne. Explore how care...
Goodbye to Faith!
This month, we said goodbye to our wonderful Senior Fundraising Officer, Faith. A huge part of the...
#Resolution4Rare advances: Rare diseases poised for global recognition
This week’s blog is written by our Digital Resources Manager, Blayne. Read a summary of what the...
The mental health crisis in small charity leadership – it’s time to face reality
This week’s blog comes from our Chief Operating Officer, Mary Rose Roberts. In response to a...
Nick Sireau: Beacon Co-Founder continues fight for better patient outcomes
At the end of 2024, Beacon’s co-founder and Chair Nick Sireau stepped down from our Trustee Board...
Beacon’s role in the LifeArc Translational Centres for Rare Disease
This week's blog is written by our CEO, Rick Thompson. He discusses our role in the new LifeArc...
Fundraising, without a Fundraiser?
At Beacon we work with, and for, hundreds of small and medium-sized patient organisations each...
Student Volunteering Week 2025 is here!
It’s Student Volunteering Week! Student Volunteering Week is hosted by the Student Volunteering...
Meet our new Senior Scientific Projects Officer, Megan!
We’re so excited to introduce Megan our new Senior Scientific Projects Officer, who joined the...
Our 2024 highlights!
As we come to the end of 2024, it's a great time to reflect on an incredible year at Beacon. We're...
Prader-Willi Syndrome: My experience as a carer, a geneticist and a medical student
This week’s blog has been written by Andrew Strong. In his blog, Andrew explores the barriers...
Abigail’s secondment experience at Beacon!
This week’s blog was written by Abigail Lampkin. Abigail is a Senior Analyst at Costello Medical,...
Meet a Beacon volunteer, Georgia!
This week's blog is written by Georgia Kennedy, who recently volunteered at Beacon. Hear more...
Our highlights from the REMEDi4ALL General Annual Meeting in Budapest!
This week’s blog was written by our Projects Officer, Gabriel! Earlier this month our Science Team...
How to look after your mental wellbeing as a rare community leader
Thursday 10th October 2024 is World Mental Health Day. To recognise this, Rareminds is sharing a...
Our CEO, Dr Rick Thompson reacts: The financial relationships between the pharmaceutical industry and patient organisations
In this week's blog we're highlighting our CEO, Dr Rick Thompson's response to a recent article...
Recruitment insights: a conversation with Chloe Joyner and Emma King from Usher Kids UK
In this week's blog, Chloe Joyner (Founder) and Emma King (CEO) from Usher Kids UK share their...
Meet a Beacon volunteer, Robyn!
This week's blog is written by Robyn Beckett, who recently volunteered at Beacon! Read more about...
Beki’s experience volunteering at Beacon!
This week's blog is written by Beki Warner, who recently volunteered at Beacon! Read more about...
Read Amber Naeem’s essay from the Student Voice Prize!
This week's blog is an essay written by Amber Naeem as part of last year's Student Voice Prize...
Read Neelabh Datta’s essay from last year’s Student Voice Prize competition!
This week's blog is an essay written by Neelabh Datta as part of last year's Student Voice Prize...
We exhibited at Cambridge Pride 2024!
This week's blog is written by our Projects Officer, Gabriel Ortega Toledo. Gabriel and our former...
Goodbye to Abby!
Last month we said farewell to our wonderful Scientific Projects Officer, Abby! Abby played a huge...
Our Scientific Projects Officer, Abby’s experience of the first REMEDi4ALL Hackathon!
This week's blog is written by our former Scientific Projects Officer, Abby Stock-Duerdoth who...
Meet Elizabeth, our new Events Officer!
We’re so excited to introduce Elizabeth our new Events Officer, who joined the Beacon team this...
Meet Gabriel, our new Projects Officer!
We’re so excited to introduce Gabriel our new Projects Officer, who joined the Beacon team this...
Celebrating success at #iDR24
Back in March we teamed up REMEDi4ALL and MeRIT to bring the first international drug repurposing...
Congenital Muscular Dystrophy: Kelly and Avery strive for rare inclusion
This week's blog is from Kelly Berger and Avery Roberts, who both live with the rare condition,...
Breaking Barriers: Tanita Allen’s Advocacy for Huntington’s Awareness
This week's blog is written by Tanita Allen, a passionate advocate for raising awareness about...