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MPS Society UK, here for those with rare diseases @MPSSocietyUK

MPS Society UK is the only registered charity providing professional support to those affected by MPS, Fabry and related diseases. mpssociety.org.uk Amersham, Buckinghamshire, UK Joined May 2012
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MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

21 minutes ago

As #FabryAwareness Month draws to a close, we’d like to share our latest Fabry roundup including an update from the Support & Advocacy team buff.ly/4b2UQvG and we hear from Martin who has watched his family struggle to get a diagnosis. #WhatIsFabry

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

3 hours ago

Oladapo explains that having a genetic difference doesn't mean he shouldn't be involved in society #FabryAwareness #WhatIsFabry

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

a day ago

In this presentation from #FabryMatters2024, Alison Wilson, Senior Support & Advocacy Officer at the MPS Society, explains how Fabry is inherited and highlights why family communication matters: buff.ly/4djXEWM #WhatIsFabry #FabryAwareness

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

4 days ago

Following on from her presentation on nutrition for people with Fabry posted earlier this week, Dr Seema Kanwal shares what she feels people should know about living with Fabry. #WhatIsFabry More videos for #FabryAwareness Month available here: mpssociety.org.uk/how-you-can-he…

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

5 days ago

Inspired by our 2024 #LondonMarathon team? Then why not apply for our own place for next year and you can run for the MPS Society. The 2025 TCS London Marathon ballot closes on FRIDAY 26TH APRIL so be quick: buff.ly/3vZv38e Good luck and thank you! #TeamMPS

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

5 days ago

Gaucher is in this month's #Spotlightonrare. People with Gaucher have a deficiency of an enzyme responsible to break down glucocerebroside. One of the first noticeable symptoms is an enlarged abdomen due to their affected liver and spleen. Learn more: buff.ly/3ZxUub

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

6 days ago

It often takes years of tests, hospital appointments and misdiagnoses for a patient with a rare disease to receive a proper diagnosis, which can have a considerable emotional impact on patients and caregivers. Help us #ElevateCareForRare #IAmNumber17

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

6 days ago

Thanks to our 2024 London Marathon who's team total this year is now over £44,000 and there's more to come! Thanks to Joe who was originally meant to run last year and had raised over £6,500! CONGRATULATIONS! Post your medal photos below! #WeRunTogether #LondonMarathon #TeamMPS

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

6 days ago

Dr Seema Kanwal, member of the Canadian Fabry Association, discussed nutrition at #FabryMatters2024 in March. Topics included possible GI symptoms, why they occur and how they can be managed. Catch up on her presentation: buff.ly/3w3yc72 #WhatIsFabry #FabryAwareness

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

a week ago

Nominate us to win up to £5,000! >> buff.ly/3I6EoxV @benefactgroup Movement for Good is back. Nominate us between 22-26 April by filling in the form for the Health & Wellbeing charity draw using our charity number (1143472). Boom! Easy. And don't forget to share it 🙏

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

a week ago

Today is the 2024 #LondonMarathon! We know this will be an emotional day for our team, but we'll be behind them all the way! To Jon, Jess, Hana, Damian, Craig, Kevin, James and Joe, thank you and good luck! Click to donate and follow their progress: justgiving.com/campaign/mpsso…

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

a week ago

Fancy being part of MPS Society’s 2025 London Marathon team? The ballot for next year’s #LondonMarathon opens today and closes on 26th April 2024. Enter the ballot here tcslondonmarathon.com and if selected you can run for The MPS Society! Good luck everyone! #TeamMPS

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

2 weeks ago

Knowledge = early diagnosis. Spread the news about a new Fabry education tool for professionals. This #FabryAwareness Month send a copy of this handy postcard to any healthcare professional you interact with #WhatIsFabry. More info here: mpssociety.org.uk/how-you-can-he…

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

2 weeks ago

Congratulations to our first Lucky Lottery winner, Michael, who matched 3 numbers in last week’s draw and won 5 free entries! He said: “The Lucky Lottery is so easy to sign up to and a great way to support a cause close to your heart.” Sign up: buff.ly/3v9m18g

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

2 weeks ago

Daryll and Wendy shared their worry about the lack of information about Fabry and how this affects all aspects of their lives, from employment to a simple trip to the GP #WhatIsFabry #FabryAwareness

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

2 weeks ago

We always put the people we support at the centre of what we do. By leaving a gift in your will you're making a difference to our members. But writing a will can seem daunting so we’ve teamed up with @kwil_wills who can help you. Find out more: buff.ly/43ZOLgO

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

2 weeks ago

Today, MPS Society CEO, Bob Stevens, represented our patient community at a Specialist Health Care Alliance meeting at the House of Lords in London where he had the chance to hear from John Stewart, National Director of Specialised Commissioning at NHS England.

MPSSocietyUK Profile Picture

MPS Society UK, here for those with rare diseases @MPSSocietyUK

2 weeks ago

A huge thank you to Michael Costa who completed the London Landmark's Half Marathon in 1 hour and 49 minutes! He raised £2370.00 in honour of Harvey Brown who has MPS 4 and other families affected by MPS, Fabry, and related conditions. Well done and thank you Michael!

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