by Philippa Norman | Findacure team, Findacure team|Rare disease world
It may not be a Thursday but we think it’s time to revisit some of the exciting things our Senior Projects Officer, Philippa got up to in May when she attended the AKU Society’s 12th Annual Scientific Conference in Brussels and also the Podcast show in London!
by Beacon | Blog, Patient stories|Rare disease world
In honour of Rare Chromosome Disorder Awareness Day, Becky Tilley has kindly returned to our blog to share how her and her family’s rare chromosome condition, Koolen-de vries syndrome, has impacted her mental health. Read now and share!
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!