For this week’s blog, we’re highlighting Huntington’s Disease Association’s #HuntingtonsInMind campaign. Watch Charlie’s story of living with Huntington’s.
The Student Voice Prize: Comparing inequalities between Primary Ciliary Dyskinesia and Cystic Fibrosis
Jenny Wei, a shortlisted candidate from The 2021 Student Voice Prize, compares two rare diseases, Primary Ciliary Dyskinesia (PCD) and Cystic Fibrosis (CF), to show the disparities in diagnosis, treatment and research. Read her essay now and share!
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!
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!
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!
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.