Discover the #HuntingtonsInMind campaign
For this week’s blog, we’re highlighting Huntington’s Disease Association’s #HuntingtonsInMind campaign. Watch Charlie’s story of living with Huntington’s.
England’s Action Plan Priority 1 summary: Helping patients get a final diagnosis faster
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!
Farewell and thank you to our graphic design intern, Freya!
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!
My Koolen-de Vries Syndrome diagnosis: Differences are Worth Celebrating
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.
Wife sets out to complete her late husband’s film project on children with acute flaccid myelitis (AFM)
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!