Publications

Take a look at our latest publications
Vimizim treatment for Morquio A
The Managed Access Agreement – A guide for patient and parents
Guidebook published June 2019 
Burden of illness in Sanfilippo disease (MPS III) - results from an international caregiver survey
Poster presentation at the 15th Annual WORLD Symposium, February 2019, Orlando, Florida, USA
Fabry Findings – Issue 1 
The first in a series of publications for the Fabry Community, published June 2019
Pathway to diagnosis in Sanfilippo disease (MPS III) - results from an international caregiver survey
Poster presentation at the 15th Annual WORLD Symposium, February 2019, Orlando, Florida, USA
Patient reported outcomes in MPS IVA patients receiving enzyme replacement therapy - the patient reported experience after the first two years on an English Managed Access Agreement
Poster presentation at the 15th Annual WORLD Symposium, February 2019, Orlando, Florida, USA
Understanding Fabry in families - preliminary findings from a global survey
Poster presentation at the 15th Annual WORLD Symposium, February 2019, Orlando, Florida, USA
Multi-stakeholder engagement leading to access to treatment for MPS IVA (Morquio A) - a model for the ultra-rare disease community
Poster presented at the 14th Symposium on MPS and Related Disease, July 2016, Bonn, Germany

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