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.

 

Conference, Connections & Confidence

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!

Farewell and thank you to our Fundraising Officer, Sophia!

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!

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

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

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.