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.
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!
Get paired with a medical student for The 2022 Student Voice Prize!
Share your lived experiences with a doctor, nurse or scientist of tomorrow through the Patient Group Pairing Scheme. Apply to be paired with a student for The 2022 Student Voice Prize to discuss your rare journey and insights with an up-and-coming medical student!
The drug repurposing landscape is changing and so is our #DrugRepo22 conference!
The drug repurposing landscape is changing and so is our Drug Repurposing for Rare Diseases Conference 2022! Learn how now.
Farewell and thank you to our Fundraising Officer, Sophia!
This week’s blog was written by our Fundraising Officer, Sophia! Sophia is sadly leaving us to pursue a Masters in Education at University College London (UCL) at the end of September. We are gutted to lose such an integral member of our team, but we’re so excited for Sophia as she embarks on this exciting, new journey. Beacon won’t be the same without her, so join us as we say farewell and thank you to Sophia. We’ll miss you!
We took over the UK airwaves!
We took over the UK airwaves! Beacon was featured on London Live TV, Modern Mindset and more. Our campaign reached 2.1 million! Watch two of our interviews now.
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!