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...