See all the latest news, blogs and updates from the medical sector.
PPPN: working together
The PPPN is working together to improve care and outcomes for people living with Lysosomal Storage Disorders
Our response to the Timms Review of Personal Independence Payment (PIP)
The publication of the Timms Review marks an important moment in the future of Personal Independence Payment (PIP), with the review concluding that the current system is not fit for purpose.
Ambassador stories from the International MPS Symposium
Alison and Bethanie from the Patient Services Team were excited to be joined by our ambassadors Sam, Jacob and Helen in Florence. Together they reflect on their experience and share some core messages from the presentations they attended.
Reflections from Florence: connection, hope and a global community
As an ambassador for the MPS Society, Helen recently attended the International MPS Conference in Florence. Focussed on representing our community to the best of her abilities, Helen reflects on all the highlights of her trip.
Together we can transform lives
Check out our Awareness Week special, highlighting all our amazing supporters wearing it blue and raising funds for the MPS Society.
A special evening with the MPS Society
In celebration of MPS Awareness Week and Fabry Awareness Month, we hosted a special evening in London focused on the future for those living with MPS, Fabry and related conditions.
The power of volunteering
Ria, Ahmed, Helen and Keshini share their motivations for volunteering with the MPS Society.
"It's good to know I'm not alone": the value of our community spaces
Our online community spaces continue to grow, with more than 200 members in our WhatsApp communities and over 300 members in our Facebook community. We asked members about their experiences and the feedback was overwhelmingly positive.
Equity and quality in rare conditions
Improving equity and quality of care for people living with rare conditions continues to be a key priority across health and care systems. It is encouraging to see organisations such as NICE developing clear quality standards for rare diseases.
Together we can transform lives
Blue is the colour of our steely steppers all racing for rare. Head over to our fabulous fundraising blog to find out more!