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
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...
Previous blogs
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...
Battling uncertainty: The story of a SCAD survivor
This week's blog is an essay from one of our winners of The Student Voice Prize 2023! The Student...
Five years later and Netflix’s TV series Diagnosis still rings true
This week’s blog was written by our Digital Resources Manager, Blayne Baker. Blayne shares her...
NEW Rare Diseases Students’ Society at Cambridge University!
This weeks blog was written by Jenny Yang, founder of Cambridge Rare Disease Society (CamRDS). The...
Farewell to Sophie!
We are sorry to announce that our Projects Officer, Sophie is leaving Beacon. During her time here...
Chapman Shum’s Musical Odyssey
This blog was written by Chun, father of Chapman. "Chapman Shum, is a 13-year-old boy born blind...
The Rare Spotlight: Rhys Holmes on the importance of raising awareness for Superficial Siderosis
This week’s blog was written by Rhys Holmes. In 2016, Rhys was diagnosed with Infratentorial...
With great power comes great responsibility
This week’s blog was written by our Scientific Projects Manager, Eve. Eve discusses the topic of...
The Rare Spotlight: Sailaja Maganti on navigating life with Prurigo Nodularis
This week’s blog was written by Sailaja Maganti, a passionate patient advocate. She shares her...
The Rare Spotlight: Erin Paterson on telling the world about Huntington’s
This week’s blog was written by Erin Paterson, patient advocate and founder of Lemonade Press. Her...
Look back at our highlights from 2023!
As we come to the end of a fantastic year at Beacon, this is a great time to reflect on what we’ve...
The Rare Spotlight: Caroline Olshewsky – How FAR can we go?
This week’s blog was written by Caroline Olshewsky, a passionate advocate and mother. Her youngest...
The Rare Spotlight: Becky Tilley shines a light on finding strength in adversity
This week’s blog was written by Becky Tilley. Becky is a passionate advocate for finding strength...
Our Projects Officer, Sophie, attended the Action Duchenne Conference!
This week’s blog was written by our Projects Officer, Sophie. On the 10th November, Sophie...
Discover the power of SEO for your patient group!
In this week's blog we explore the power of using Search Engine Optimisation (SEO) as a tool to...
Will’s first year at Beacon!
This week’s blog was written by our Administrative Officer, William May. October marked Will's one...
Eve’s first year at Beacon!
This week’s blog was written by our Scientific Projects Manager, Eve. October marked Eve's one...
We share our highlights from the RareSummit 2023!
On 12th October, Faith, Sophie and Blayne attended RareSummit23 at the Wellcome Genome Campus in...