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.
Sunflowers bloom where hope grows: The Big Sunflower Project
This week’s blog is written by Toni Abram, founder of The Information Point for Centronuclear and Myotubular Myopathy and The Big Sunflower Project. Toni shares her personal rare story with Centronuclear Myopathy and introduces us to The Big Sunflower Project. Learn how the Big Sunflower project started now!
Raising Strong & Rare
This week’s blog was written by the wonderful Victoria Arreola, Founder and CEO of Strong and Rare Parenting. Victoria shares her personal Strong and Rare journey, how she took civic action, why she created her podcast and more. She leaves with a vital message that deserves your attention. Read now.
Nitisinone isn’t just fighting AKU, it’s fighting mosquitos!
Dr. Álvaro Acosta-Serrano’s research team at the Liverpool School of Tropical Medicine (LSTM) is working to reduce mosquito populations using nitisinone! Learn more.
MAY we have a little throwback?
It may not be a Thursday but we think it’s time to revisit some of the exciting things our Senior Projects Officer, Philippa got up to in May when she attended the AKU Society’s 12th Annual Scientific Conference in Brussels and also the Podcast show in London!
Caring for my family and my mental health: Rare Chromosome Disorder Awareness Day
In honour of Rare Chromosome Disorder Awareness Day, Becky Tilley has kindly returned to our blog to share how her and her family’s rare chromosome condition, Koolen-de vries syndrome, has impacted her mental health. Read now and share!
Discover the Shine a Light on XLH Campaign
Discover the Shine a Light on XLH Virtual Exhibition to see how Kyowa Kirin is raising awareness of the impact X-linked Hypophosphataemia (XLH) can have on all aspects of one’s life. Learn more and view the exhibition!
Grab me a pint (of science!)
Last week, the Beacon team headed out to paint the town red and get drunk on knowledge at Pint of Science. Read our summary of what we learned!
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.