Several members of the LSD collaborative gave moving accounts of life with a rare condition and the desperate need for earlier diagnosis. Georgina Morton of the Archangel MLD Trust has been making great strides in gaining parliamentarians attention of the need for more conditions to be added to the UK newborn screening panel. We are working with Georgina and the LSD Collaborative in this campaign.
The recording of the meeting (see below) is worth watching alone for the passion and frustration expressed in the talk by Prof Simon Heales, we highly recommend it!
Speakers included:
· Liz Twist MP, Chair, All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions
· Professor Simon Heales, Great Ormond Street Hospital
· Professor Laurent Servais, MDUK Oxford Neuromuscular Centre
· Dr Will Evans, Niemann-Pick UK
· Amanda Mortensen, Batten Disease Family Association
