Our Blog
Welcome to the Beacon blog!
We produce a weekly blog to share what we have been up to alongside the rare community.
Our Blog
Welcome to the Beacon blog!
We produce a weekly blog to share what we have been up to alongside the rare community.
Our blog is published every Friday and varies in topic and voice. 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.
Looking back: 1 year on since rebranding from Findacure to Beacon for rare diseases
Our rare diseases charity in Cambridge, UK rebranded from Findacure to Beacon for rare diseases over a year ago. View the impact of our rebrand!
My Inclusion Body Myositis
John Muller, Founder of GettingUp.org shares his personal experience of being diagnosed with inclusion body myositis for this week’s blog. Read his story!
We coordinated our appearances in the lead-up to Rare Disease Day!
The Beacon team has been all over the country in celebration of Rare Disease Day. Join us as we look back at this year’s Rare Disease Day celebrations and see what we thought of each event!
Juliet is running a 10k for Beacon!
Our office colleague and friend, Juliet is running the GEAR 10K in support of our rare diseases charity, Beacon for rare diseases. Donate to her run!
Craniosynostosis and a chance encounter
This week’s blog is written by Tracey Harney, who is the proud mum to Isobelle! Tracey shares her rare journey and the chance encounter that led to Isobelle receiving a diagnosis. Spoiler alert: You know the nurse Tracey met!
My Ray of Sunshine: Our VAMP2 journey
This week’s blog is written by Alex Gaudlap! Alex’s firstborn son was diagnosed with the rare condition, VAMP2. She shares her rare journey to help others living with VAMP2 and those living with a rare disease. You can follow Alex’s journey on her website, Instagram and Facebook!
Picking up the baton for Sarah and CASK warriors
This week’s blog was written by Laura Hattersley, Founder and Director of the CASK Research Foundation. Laura picked up the baton for her daughter Sarah and other CASK warriors by founding the UK rare disease organisation CASK Research Foundation in January 2022. Her organisation is passionate about helping to find treatments for CASK gene mutations. Read Laura’s rare journey.
Why attend Beyond the Student Voice Prize: exploring opportunities in rare diseases
Learn why you should attend Beyond the Student Voice Prize 2022 on Rare Disease Day! The event is an informal opportunity to meet fellow entrants to the competition, connect with patient group advocates and hear from those working actively in rare diseases. Register now!
Meet Chloe, our new Scientific Projects Officer!
We’re thrilled to introduce our new Scientific Officer, Chloe who joined the Beacon team in November 2022! Get to know one of the newest members of our team and email her at chloe@rarebeacon.org to say hello.
’22 went by in the blink of an eye!
2022 went by in the blink of an eye! See what our Cambridge rare disease charity and patient advocacy groups achieved together this year.
Our review of the 13th World Orphan Drug Congress Europe
This year was the first time three members of our team attended the World Orphan Drug Congress Europe, so learn what it was like for Eve, Hannah and Philippa to attend the largest and most established orphan drugs and rare diseases meeting of its kind across the globe now!
Meet Will, our new Administrative Officer!
We’re so excited to introduce our new Administrative Officer, Will who joined the Beacon team this October! Get to know one of the newest member of our team and email him at will@rarebeacon.org to say hello.
Relive Drug Repurposing for Rare Diseases 2022
Relive Drug Repurposing for Rare Diseases! Our drug repurposing conference highlighted the repurposing of drugs across the UK and Europe. View photos and recordings now!
10th birthday highlights from Rick, Mary Rose and Philippa
Beacon for rare diseases turned 10 on 7 November 2022! Three of our oldest Beacon team members share their favourite moment from the decade. Read now!
Meet Eve, our new Senior Scientific Projects Officer!
We’re so excited to introduce our new Senior Scientific Officer, Eve who joined the Beacon team this October! Get to know the newest member of our team and email her at eve@rarebeacon.org to say hello.
Conference, Connections & Confidence
This week’s blog is written by Rhys Holmes, who you may know from Drug Repurposing for Rare Diseases 2022! Rhys was diagnosed with the rare neurodegenerative disease superficial siderosis. He joined us at #DrugRepo22 to share his rare journey about losing his hearing and how an off-label drug, deferiprone, has improved his quality of life. Rhys summarises his experience at our Drug Repurposing for Rare Diseases conference!
“Beyond Limits: Rare Men Talking Mental Health”
In honour of World Mental Health Day on 10 October 2022, Rare Patient Voice helped to launch “Beyond Limits: Rare Men Talking Mental Health,” a new short film from our rare disease patient/advocate David Ross! Watch his film now!
From tragedy to triumph: Hereditary Brain Aneurysm Support
This week’s blog is written by Rebecca Middleton, Founder of the rare disease patient group, Hereditary Brain Aneurysm Support (HBA Support). HBA Support was founded in September 2022 in response to Rebecca’s personal rare journey. Rebecca shares her story and how HBA Support came into existence.
Twin Anemia Polycythemia Sequence – A Rare Disease Affecting Twins
Stephanie Ernst, Founder of TAPS Support, shares how her twin girls were diagnosed with twin to twin transfusion syndrome (TTTS) and Twin Anemia Polycythemia Sequence (TAPS) – a rare disease affecting twins. Read her rare journey now.
Meet Faith, our new Fundraising Officer!
We’re so excited to introduce our new Fundraising Officer, Faith, who joined the Beacon team last week! Get to know the newest member of our team and email her at faith@rarebeacon.org to say hello!