See all the latest news, blogs and updates from the medical sector.
News
MPS Society CEO steps back after a decade supporting rare disease communities
After nearly a decade at the helm of the MPS Society, our Group CEO, Bob Stevens, has announced that he will take a step back from his role at the end of this year.
03/08/2026
News
Generation Study update: implications for our expanded UK newborn screening panel work
We wanted to share an important update with our community about the Generation Study and what the completion of this research programme means for the future of newborn screening.
29/07/2026
News
MHRA consultation on rare disease therapies
The UK Medicines and Healthcare products Regulatory Agency (MHRA) has launched a public consultation on proposed new guidance for rare disease therapies.
27/05/2026
News
MPS Society responds to key government consultations on support for children with complex needs
Over the past few weeks, the MPS Society has submitted responses to two important government consultations focused on education and support for children and young people with complex medical and additional needs.
21/05/2026
News
Benefits support and upcoming changes
We know that ongoing changes to the benefits system can feel unsettling and that many families are facing uncertainty as reforms are discussed and introduced over the coming years.
23/04/2026
News
Denali Therapeutics announces U.S. FDA approval of MPS II treatment
Following Denali's announcement that the FDA has approved an enzyme replacement therapy for the neurological aspects of MPS II, we recognise that our community may have questions.
27/03/2026
News
Leni’s story strengthens call for childhood dementia recognition and newborn screening reform
Leni's story highlights the devastating reality faced by families affected by childhood dementia, why this needs to be a recognised condition and how newborn screening reforms can help others living with rare conditions.
24/03/2026
News
Family living with MPS III join Jesy Nelson for emotional Mother's Day campaign
Emily and Leni were invited to join Jesy for the special Mother's Day event she organised to celebrate mums caring for children with disabilities and rare conditions.
18/03/2026
News
Proposed EHCPs reforms and SEND consultation
We want to reassure families that there are no immediate changes to EHCPs and there is no action you need to take at this stage.
03/03/2026
News
Bob Stevens receives prestigious PAL Award
At the 2026 WORLDSymposium, Group CEO Bob Stevens was honoured with the PAL Award. In his speech, he emphasized the importance of standing together as a global community and that this work must always be about people not profit or politics.
