See all the latest news, blogs and updates from the medical sector.
News
Using UK Personal Child Health Records (Red Book) to investigate early indicators of MPS disorders
This study provides insights into early indicators of MPS disorders by using parent-held child health records of children based in the UK.
05/08/2020
News
Ross Kemp's Living With Dementia series visits a family affected by Sanfilippo
Ross Kemp meets the Mills family to talk about 5-year-old Penny who has Sanfilippo.
31/07/2020
Blog
Have your say to improve services for ultra-rare diseases
If you are affected by an ultra-rare disease we need your help to make support change and improve your care and services.
29/07/2020
News
Online mindfulness course with Claire Garthwaite
Claire is running two online mindfulness courses that will follow an 8-week programme aimed at those affected by MPS and related diseases.
27/07/2020
News
Young adult webinars by Fabry International Network
FIN is very committed to training the next generation of patient advocates and also providing a platform for young adults.
23/07/2020
Blog
A tribute to Simran Bhachu (16 Sept 1994–5 July 2019)
A tribute to Simran Bhachu
05/07/2020
Blog
Testing times - maintaining specialised laboratory testing under COVID-19
Professor Simon Heales and Dr Derek Burke of the Enzyme Unit at Great Ormond Street Hospital describe their journey through COVID-19 and...
05/06/2020
Condition
Brain disease treatment shows promising signs
Early results for a potentially revolutionary brain disease therapy given under compassionate use to a two-year-old has shown promise.
14/05/2020
Blog
7 ways to have fun in MPS Awareness Week
For this installment of the #WednesdayWebinarSeries we are giving you ideas on how to have fun as part of our MPS Awareness Week campaign!
13/05/2020
Blog
Rainbows
We asked our community to send in their rainbows so we could show our appreciation to NHS staff and other health workers.
