See all the latest news, blogs and updates from the medical sector.
Blog
Wellbeing Wednesday
We know that living with a rare condition is tough. Some days are good, but some days aren’t! Our goal is to equip you with a ‘bag of tricks’ that you can pick and choose from when you need an extra pick-me-up.
24/10/2024
Blog
Representing you
We recognise that when it comes to supporting our members we can do so much more through collaboration. Each month we represent you on a variety of different forums and here’s what we’ve been up to in October.
24/10/2024
Blog
Together we can transform lives
Take a look at the autumn addition of the fundraising round-up, where you can enjoy reading a wide variety of fundraising challenges.
19/09/2024
Blog
Back to school 2024
Thanks for sharing your new term, back-to-school photos. We love seeing everyone looking so happy!
18/09/2024
Blog
New beginnings
The summer holidays are always such an exciting time of the year but they can also be the gateway from the familiar to the unknown. Hear from some of our members who have been in the same situation or will be facing new beginnings just like you.
22/08/2024
Blog
Alison's Scotland trip
The Support and Advocacy Team have been working on building a sense of community across our membership. A huge part of that has focused on Scotland and saw Alison embarking on an epic trip for MPS Awareness Week.
18/07/2024
Blog
Together we can transform lives
Head over to the fundraising round-up to read about our biggest fundraising achievements to date. You will be amazed at how much has been raised in just 3 months!
16/07/2024
Condition
SMC accepted pegungalsidase alfa (Elfabrio®) for the long-term treatment of adults with Fabry disease
The Scottish Medicines Consortium (SMC) has accepted pegungalsidase alfa (Elfabrio®), for the long-term treatment of adults with Fabry disease for restricted use.
08/07/2024
Blog
CSAC Update July 2024
Hear from our trustee, Dr Fiona Stewart, as she reflects on the past six months of CSAC achievements and looks ahead to an exciting autumn.
02/07/2024
Condition
Update for patients with late onset LAL D (Lysosomal acid lipase deficiency)
Despite best efforts, NICE was unable to make a recommendation for the use of sebelipase alfa in LAL-D patients with non-Wolman disease.
