ArchAngel Blog

We have now partnered with Real Buzz to secure charity places on world-wide marathons and half marathons! Full support is given to runners in their fundrasing efforts. More information can be found at their website [link]

Today is Rare Disease Day. Thinking of our MLD families, who struggle and grieve today and every day. We see you. 

Some excellent coverage in today's press of the first MLD affected child to receive Libmeldy in the UK. Thanks to the incredibly strong Shaw family for sharing their story and raising important awareness of MLD and the need for Newborn Screening.  

The BBC have made an excellent documentary following Teddi Shaw, the first UK patient to receive transformative gene therapy for MLD, 'Libmeldy'. This is the therapy which we, and many dedicated others, fought so hard to get approved in the UK. Hats off to all involved, especially the remarkable teams at Manchester Children's Hospital and Ospedale San Raffaele in Milan and the extra....

Today is INTERNATIONAL NEONATAL SCREENING TODAY. Newborn screening has the power to save or dramatically improve the lives of those with rare diseases, by identifying conditions and allowing for treatment at the earliest opportunity. ArchAngel is proud to be a member of the UK Newborn Screening Collaborative, comprising 14 key rare disease patient organisations, plus Genetic Alliance UK. Collectiv....