See all the latest news, blogs and updates from the medical sector.
News
Hunter Outcome Survey
The latest Hunter Outcome Survey (HOS) for 2020 has been released. We hope that this report will help patients and caregivers who are...
26/10/2021
Blog
Back to school photos
Thank you to everyone who sent their back to school photos in after we put out an ask on social media last week. Here are the ones we've...
21/09/2021
News
MPS Society’s Group CEO elected to the ABPI’s new Patient Advisory Council
We are thrilled to announce that our Group CEO, Bob Stevens, is one of the eight leaders from across the patient and health charity...
07/09/2021
News
Rareminds: MPS Society counselling launch
We are pleased to launch our new counselling service at the MPS Society for patients and family members.
07/09/2021
News
COVID-19 vaccination for children and young people aged 12-17 years
It is recognised that a small number of children and young people aged 12-17 years with specific underlying health conditions may be at...
30/07/2021
Condition
NICE unfortunately leans towards a no for the treatment of Metachromatic Leukodystrophy (MLD).
The drug decision-making body NICE (National Institute of Clinical Excellence) has publicly released its interim decision today (9 July...
13/07/2021
News
Willow Foundation Special Days and Treats
For people living with a life-threatening illness, every day is precious. The pressures of diagnosis, treatment and recovery can have a...
08/07/2021
News
APPG on Newborn screening
On 9 June 2021, we attended a virtual APPG (All Party Parliamentary Group) meeting on Rare, Genetic and Undiagnosed Conditions about...
29/06/2021
Condition
Vimizim update from NICE for MPS IVA (Morquio)
Update 10 June 2021: Dear stakeholders, BioMarin has requested an extension to the timelines for the re-evaluation for elosulfase alfa...
03/06/2021
Blog
At home self-infusions - Carers Week 2021
In early June, the #CarersWeek campaign is celebrated annually online to bring awareness to challenges unpaid carers face and to...
