Latest News

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ArmaGen reports preliminary evidence of cognitive improvement in children with MPS I treated with AGT-181 

Initial Results from Phase 2 Proof-of-Concept Trial Presented at 2017 WORLDSymposium Findings Demonstrate Ability of ArmaGen’s Proprietary Drug Delivery Technology to Transport Biopharmaceuticals Across the Blood-Brain Barrier ArmaGen, Inc., a privately held biotechnology company focused on developing groundbreaking therapies to

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Join us for a fun-filled day at Howletts Zoo

The MPS Society are offering a fun-filled day at Howletts – the Aspinall wild animal park on Friday 7th April 2017. From only £10 for a family of four this will be a great day out at Kent’s original wildlife park. With over

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Press release – NICE condemns to death up to three babies each year in England

NICE the drug decision making body have announced their final decision  today, Wednesday 15 February 2017, not to recommend Kanuma (Sebelipase alfa), the treatment for  individuals suffering from Lysosomal Acid Lipase Deficiency (LAL D). Kanuma was given fast track approval

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FDA permits marketing of first newborn screening system MPS I and Fabry

The U.S. Food and Drug Administration have permitted marketing of the Seeker System for the screening of four, rare Lysosomal Storage Disorders (LSDs) in newborns. The Seeker system is designed to detect Mucopolysaccharidosis Type I (MPS I), Pompe, Gaucher and Fabry.

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MPS in numbers

896

individual and families
supported in 2015

25

rare disease supported

3,364,628

£ given research projects
between 1984-2010