Top Tweets for #MPSAwarenessWeek
Our aim with the pocket knowledge series is to increase awareness surrounding rare diseases. In this particular installment, we focus on MPS III (Sanfilippo), a rare autosomal recessive condition. #MPSAwarenessWeek #rarediseases #research
For #MPSAwarenessWeek, we shine the spotlight on MPS I Hurler, Hurler-Scheie, and Scheie syndromes. #research #rarediseases
This week, in light of #MPSAwarenessWeek, we will be raising awareness of the impact and challenges faced by those living with MPS. Learn more at https://t.co/9zAZoDUlU5 #research #rarediseases
We would like to say a big THANK YOU, to St Andrews Toddler Group, Cleveden, who raised £45.15, during MPS Awareness Week, supporting one of our lovely members 18 month old Ada who has MPS I. Thank you so much for all you have done and are still doing. 🙂 💙 #MPSAwarenessWeek
Well, what a week we have just had! It’s been fantastic. We would like to say a big THANK YOU to everyone who got involved in #MPSAwarenessWeek, whether that was wearing something blue, baking blue cupcakes, raising awareness or rattling Bob the bucket with a kind donation. 💙
There is still time to contribute to our virtual bucket this #MPSAwarenessWeek. The total so far is £314 and we want to say a huge thank you to those who have donated to help improve the lives of those affected by MPS. #ChaseTheSigns #MPS #MPSDiseases #WearitBlue
For #MPSAwarenessWeek, a family supported by RDRP kindly shared a few words with us about their daughter's MPS journey. #chasethesigns #research #clinicaltrials
Our Counsellor Stephen provides support people impacted by #MPS and #Fabry disease through our partnership with the @MPSSocietyUK. #MPSAwarenessWeek #WearItBlue #ChaseTheSigns #MentalHealthAwarenessWeek #Anxiety
https://t.co/jl7QxioxHu
#MeetTheTeam! Stephen is a counsellor and psychotherapist, he's currently working with @GauchersA and @MPSSociety.
#RareMindsMatter #RareDisease #MentalHealth
Our series 'Pocket Knowledge' aims to inform and educate using accessible language on some of the rare diseases we work with. Here's MPS II Hunter.
#raredisease #rarediseases #research #MPSawarenessweek
Thank you for your support this #MPSAwarenessWeek, it will have a huge impact.. Just £6 could pay for a newly diagnosed family to receive a free member information pack, helping families through what can be a confusing and difficult time. #ChasetheSigns. #MPSDiseases #WearitBlue
Hello, it’s Bob the Bucket! I was wondering whether you have spotted me on https://t.co/uevocCBc5j yet? If you can, give me a virtual rattle to help raise vital funds that will transform the lives of families living with MPS. Thank you 💙 #MPSAwarenessWeek #ChaseTheSigns
A key feature of MPS is idiopathic short stature. Children exhibiting this have severely disordered growth and percentile values for longitudinal & transversal parameters. If you’re worried about someone, please seek medical advice. Help #ChasetheSigns this #MPSAwarenessWeek.
Nathan was diagnosed with MPS IIIA Sanfillipo when he was almost 8 years old. His father Rob describes their frustration at not getting a correct diagnosis & the support they got when they did: https://t.co/6saaPZClfj. Please share to #ChaseTheSigns. #MPSAwarenessWeek #WearitBlue
This is how it looks like when everyone shows up to #wearitblue! #MPSAwarenessWeek has only just started and you can still get involved and show your support. Follow https://t.co/3NgPCwm2xc to find out how.
You all look absolutely wonderful in blue, it’s clearly your colour 💙 Thank you for showing your support this #MPSAwarenessWeek. Keep sharing your gorgeous selfies and remember to tag us. You might find yourself in our online gallery https://t.co/3NgPCwm2xc #WearitBlue
For #MPSAwarenessWeek help us #ChaseTheSigns of MPS diseases to speed up diagnoses. Claw hand/joint contractures can be are found in all MPS types. When the IP joints of the hands are affected, the characteristic claw hand deformity develops. #MPSDiseases #WearitBlue
“Every patient that we can diagnose earlier not only will have answers to many of the questions they have been asking, sometimes for years, but will also have hope and the chance for a better quality of life.” #ChasetheSigns #MPSAwarenessWeek #MPSDiseases #WearitBlue
We provide #counselling and #wellbeing services to the @MPSSocietyUK. Give them a follow to find out more about #MPS, #Fabry and related #RareDiseases. #MPSAwarenessWeek #WearItBlue #ChaseTheSigns #RareMindsMatter #MentalHealthWeek
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