Latest News

image

Press release – NICE and NHS England put the death nail in access to medicines for those suffering from ultra-rare diseases says the MPS Society

NICE and NHS England’s decision puts patient access to rare disease medicine at serious risk Reeling from NICE’s recent decision to change the arrangements for evaluating and funding drugs and other healthcare technologies assessed through NICE’s highly specialised technology appraisal

Read More
image

Bears4Rare – 15 March – Waterloo Station

Bears4Rare: experts call on government to provide fair and fast access to treatments for rare disease patients Rare conditions affect approximately 1 in 17 people in the UK.1 Although they are living with lots of different conditions, and only 5%

Read More
image

We’re supporting Rare Disease Day 2017

What is Rare Disease Day? The last day of February every year is Rare Disease Day which aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public

Read More
image

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

Read More

MPS in numbers

896

individual and families
supported in 2015

25

rare disease supported

3,364,628

£ given research projects
between 1984-2010