by Beacon | Blog
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!
by Beacon | Blog
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!
by Hannah | Blog, Findacure events, Findacure events|Rare disease world
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!
by Beacon | Blog, Patient stories|Rare disease world
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.