At #FabryMatters2024 , Uma Ramaswami shared a greater insight into the transition of adolescents and young adults with Fabry disease from child-centred to adult-orientated health care systems. Follow up on her presentation: buff.ly/49xpjQA #WhatIsFabry #FabryAwareness

Thanks to Carolyn Hunt, Mum Shirley and sister Christine for knitting Easter chicks, bunnies and bags to raise funds and awareness in honour of Carolyn's granddaughter, Robin, who has an MPS condition. They raised a fantastic £87.50. Thank you ladies for your amazing creations!

Hear from CSAC member Simon Heales who shares his insight on a recent research project of the rapid assessment of lysosomal enzyme activity in dried blood spots which received a research grant from the MPS Society: buff.ly/49uKwuw

We asked our Fabry community what they want people to know about living with Fabry. Ruth shared her thoughts at the Fabry Matters Conference in March. #FabryAwareness #WhatIsFabry

It's #NationalSiblingsDay2024 and we're celebrating the siblings of children and adults with MPS, Fabry or a related condition and the valuable role they often play. For our family weekend at Alton Towers, we're offering a free siblings workshop. To book: buff.ly/3ITNyOg

Help raise awareness and share our animation on understanding Fabry disease which we have developed through a series of workshops with people living with the condition and so had a real insight into the way they understand it: buff.ly/4aMHu65 #WhatIsFabry #FabryAwareness

It's the London Landmarks Half today and we'd like to wish Michael the best of luck! He's running in honour of Harvey Brown who has MPS 4. Thanks for raising vital funds and awareness for the MPS Society! If you would like to find out more follow this link buff.ly/3TAS21g

We are delighted to announce that Dr David Whiteman joined our Clinical Scientific Advisory Committee (CSAC) at the beginning of 2024. He is already a fantastic member, providing valuable insights and advice based on his wealth of experience in the pharmaceutical industry.

RDRP, together with MPS Society UK, here for those with rare diseases and Prof Derralynn Hughes, explored the physical and emotional burden of Fabry disease and how these affect UK patients’ lives. View the results of the qualitative interview study buff.ly/4ajtvF6 #FabryAwareness #rarediseases #research

Dr Moreno-Martinez talks about living with Fabry disease and what it means to navigate a rare genetic condition at the Fabry Matters Conference earlier this year. Find out about living with Fabry disease: buff.ly/3U2VdQz #WhatIsFabry #FabryAwareness

Jack Moon will be taking to the ring on the 20th of April to raise money in honour of Finley who has MPS 3. We would all like to wish Jack the best of luck for his UWBC challenge! To read more or if you would like to donate please follow this link: buff.ly/49f0RUe

This year, Bob and Sophie will be attending the #mpssymposium2024com to represent our community here in the UK. Whilst there, they will be meeting with experts to further two areas of the work we have committed to in 2024. Find out more here: buff.ly/4ajVmor

Excellent work to be a part of 👏

It's Fabry Awareness Month! We've got lots planned and want you to share our posts throughout April so we can reach as many people as possible. Look out for facts, photos and presentations about Fabry coming soon and share them everywhere! #FabryAwareness #WhatIsFabry

Thank you to everyone did our Step into Spring challenge! You've raised a fantastic £3,500 to date and walked 310, 000 steps in March! Well done for raising vital funds and awareness for people affected by MPS, Fabry, and related conditions, we are so grateful for your support.

With under a month to go until the London Marathon our amazing team have raised over £31k! We're now looking for people to be inspired by this and to take on the Great North Run and the Royal Parks Half and run for rare! For more info follow this link: buff.ly/4aEkGGl

Thank you to Lloyds Pharmacy Clinical Homecare for raising £633.00 for 'Rare Disease Day' last month! They enjoyed sandwiches, cakes, and created a beautiful tree of hands designed by staff and children. Thank you so much for raising funds and awareness for the MPS Society.

Our offices will close over Easter from 29 Mar to 2 Apr but as always our helpline is open from 9am to 5pm every day during this time. If you need it, you can reach our out-of-hours support on 07712 653 258. Happy Easter! 🌷 🐣 🐰