by Beacon | Blog, Rare disease world
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!
by Philippa Norman | Rare disease world
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!
by Beacon Rebrand | Blog, Rare disease world
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,...
by Beacon | Rare disease world
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!
by Beacon | Rare disease world
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...
by Beacon | Rare disease world, Uncategorised
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