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.
Discover the #HuntingtonsInMind campaign
For this week’s blog, we’re highlighting Huntington’s Disease Association’s #HuntingtonsInMind campaign. Watch Charlie’s story of living with Huntington’s.
The Student Voice Prize: Comparing inequalities between Primary Ciliary Dyskinesia and Cystic Fibrosis
Jenny Wei, a shortlisted candidate from The 2021 Student Voice Prize, compares two rare diseases, Primary Ciliary Dyskinesia (PCD) and Cystic Fibrosis (CF), to show the disparities in diagnosis, treatment and research. Read her essay now and share!
England’s Action Plan Priority 1 summary: Helping patients get a final diagnosis faster
Priority 1 of England’s Action Plan is helping patients get a final diagnosis faster. We’ve summarised the five actions that’ll be taken to ensure this for this week’s blog. Read now and share!
Farewell and thank you to our graphic design intern, Freya!
This week’s blog was written by our Graphic Design intern, Freya, who helped to rebrand our rare disease charity as Beacon! Freya led the way on our rebrand, designing our new website and setting our brand direction (logo, colour scheme, typography and overall concept). Join us as we say farewell and thank you to Freya!
The International Rare Disease Showcase 2022
Weren’t able to attend The International Rare Disease Showcase 2022 back in February? Read our summary and watch the recordings to catch up on all the action!
My Koolen-de Vries Syndrome diagnosis: Differences are Worth Celebrating
This week’s blog is written by Becky Tilley, a KDVS mom and Kool person. Becky shares her experience of being diagnosed with the rare condition, Koolen-de Vries Syndrome, after her oldest son and now youngest daughter were diagnosed with the same condition. Becky’s story first appeared on the KdVS Foundation’s website.
Summary of Genetic Alliance UK’s Good Diagnosis report
As many in the rare community already know, nothing is worse than having to fight for your care when you are physically and emotionally drained. The diagnostic odyssey (the time between experiencing symptoms and receiving an accurate, final diagnosis) is long,...
Wife sets out to complete her late husband’s film project on children with acute flaccid myelitis (AFM)
Sarah Potter has set out to complete her late husband Scott’s film project on children living with the rare disease, Acute Flaccid Myelitis (AFM). Read her story now and get ready to see this film. She and the team reached their fundraising target!
People with #DuchenneCAN…Find out more!
In the lead-up to Rare Disease Day, we were thinking about the strong and positive people who don’t let their disease define them. And so, this week’s blog is inspired by boys and young men with Duchenne muscular dystrophy who are defying the odds and realising their...
Rare Disease Day blog series Part 2: Conditions, stats and patient groups
We hope that you enjoyed Part 1 of our Rare Disease Day blog series! Part 2 will highlight our last set of rare conditions and accompanying patient groups to help raise awareness and support. Our final blog (Part 2) discusses:
Duchenne Muscular Dystrophy (DMD)
Guillain-Barré Syndrome (GBS)
Achondroplasia
Vascular EDS
Tuberous Sclerosis Complex
Tyrosinemia Type 1
Rare Disease Day blog series: Conditions, stats and patient groups
In the lead-up to Rare Disease Day 2022, we want to highlight a few rare conditions and accompanying patient groups. Rare diseases are diverse in symptoms, cause and impact. Our two-part blog series will explore 12 rare conditions and patient groups. Part 1 of our...
Meet our new Fundraising Officer, Sophia!
For this week’s blog, we want to introduce you to our new Fundraising Officer, Sophia! Get to know Sophia and do say hello!What were you doing before you joined Findacure? Last year, I worked in Senegal for Ashinaga, an international educational organisation. As a...
Meet our Patient Group Engagement Committee member: Francesca!
This week’s blog was written by a member of our 2021-2023 Patient Group Engagement Committee! Get to know Francesca Wicks now and keep an eye out for more ‘Meet the Team’ blogs from our new committee members.
Meet our Patient Group Engagement Committee member: Tony!
This week’s blog was written by a member of our 2021-2023 Patient Group Engagement Committee! Get to know Tony Thornburn now, and keep an eye out for more ‘Meet the Team’ blogs from our new committee members in the coming weeks.
How to donate to Findacure – did we make your Christmas list?
Virgin Money Giving (VMG) is officially a ghost of Christmas past! Have no fear, though – there are still plenty of ways to donate to us this Christmas. Check out these 8 ways now!
Meet our Patient Group Engagement Committee members: Christine and Michelle!
This week’s blog was written by two members of our 2021-2023 Patient Group Engagement Committee! Get to know Christine Mutena and Michelle Conway now, and keep an eye out for more ‘Meet the Team’ blogs from our new committee members in the coming weeks.
Laura’s two years at Findacure have flown by!
Another work anniversary is upon us. This week marks Laura’s second year of working for Findacure, too! In this blog, Laura looks back on her time at Findacure and ahead at what is to come! Can you sum up your time at Findacure for us? My two years at Findacure have...
Meet our Patient Group Engagement Committee members: Chris and Craig!
This week’s blog was written by two members of our 2021-2023 Patient Group Engagement Committee! Get to know Chris Bedford Gay and Craig Mitchell now, and keep an eye out for more ‘Meet the Team’ blogs from our new committee members in the coming weeks.
Cheers to two years at Findacure with Philippa!
This week marks Philippa’s second year working for Findacure – and what a time it has been! She looks back on her time at Findacure and looks forward to what she is planning for her third year with us.
Discover the #WhoseVoice campaign!
Delve into RareQoL and Rare Community Network founder Sondra Butterworth’s #WhoseVoice campaign. Sondra shared her motivation behind launching the campaign with us, and encourages everyone to get involved. Learn what the #WhoseVoice campaign seeks to address, and film your rare disease story for Rare Disease Day on the 28th February 2022!