As you may know, the Batten Disease Family Association is a member of the LSD Collaborative. The LSD Collaborative is a group of charities and patient organisations that support patients with Lysosomal Storage Disorders (LSD). This group works together on…
We are delighted to have limited stock available of the Erasmus+ funded book on CLN3 and education. It has 34 chapters on a wide range of topics including: Perspectives on education and training Planning education, assessment and intervention for students…
Yesterday, Wednesday 13 Nov 2019, the first infusion of Brineura was given to a child at Great Ormond Street Hospital as part of the new Managed Access Agreement between BioMarin and NHS England. The child would not have been able…
