MoebiusResearchTrust

The Moebius Research Trust is dedicated to raising awareness and funding to allow research into Moebius Syndrome.

[MoebiusResearchTrust @MoebiusUK]

Teacher, Jack Smith, inspired by Grayson, is raising awareness of Moebius Syndrome and funds for the charity by taking on the Summer Green Man ultra marathon on 23rd August. Please visit Jack's page to sponsor him https://t.co/pLDHNjGBtF

[MoebiusResearchTrust @MoebiusUK]

We are looking for teenagers and young people (11-23) in the UK with Moebius Syndrome to join Kristy for an online workshop on Saturday 12th July 2025! Contact [email protected] - or visit the website
https://t.co/mu4zo640UH

[MoebiusResearchTrust @MoebiusUK]

We’re delighted to welcome Kristy Hennessey to the team. First off, she'll be organising an online workshop for teenagers/young adults in July – so if she reaches out to you this is what it’s about.
Read Kristy's Moebius story https://t.co/1qBS3L9Kxo

[MoebiusResearchTrust @MoebiusUK]

There's still a week to complete this survey - please pass it on to young people / parents who might be interested.

[RCPCH_and_Us @RCPCH_and_Us]

RCPCH &Us and @BPSUtweet have a survey for children & young people aged 13-25, who have a rare disease & live in the UK. We want to hear your views. To complete the survey visit: https://t.co/8nRkVYKiiO #voicematters #youngpeoplematter

[MoebiusResearchTrust @MoebiusUK]

It's #RareDiseaseDay. @rarediseaseuk is the national campaign for people with rare diseases and all who support them.

[MoebiusResearchTrust @MoebiusUK]

A massive thumbs up and thank you to everyone who raised funds and awareness over the weekend. You are all stars and this year over £1,000 has been raised for the charity. #msad #moebiussydromeawarenessday #wesmilefromourhearts

[MoebiusResearchTrust @MoebiusUK]

Wash away 'blue Monday' - make plans to turn the world purple on Moebius Syndrome Awareness Day - only 6 days to go!

[MoebiusResearchTrust @MoebiusUK]

It's Moebius Syndrome Awareness Day on Sunday 24th January. Please join the global Moebius Syndrome community https://t.co/4njuYJPS66, https://t.co/gCsHrYUChX, https://t.co/9LHe4g9BRQ & https://t.co/l0SxQLYC9M to celebrate 10 years. Whatever you do - stay safe and thank you.

[MoebiusResearchTrust @MoebiusUK]

Watch out for Dionne on @STVNORTH at 7pm this evening. Great opportunity to raise awareness on #MSAD

[MoebiusResearchTrust @MoebiusUK]

Turn your day purple and celebrate the 10th Moebius Syndrome Awareness Day https://t.co/k33VKOMvx2 #msad #wesmilewithourhearts

[MoebiusResearchTrust @MoebiusUK]

Wishing our New York friends a wonderful day tomorrow @brynwebbmd https://t.co/KhNflDdZsC

[Bryn Webb @brynwebbmd]

Our NYC Moebius Syndrome Awareness Day Event is 4 days away!!! Please come join us @SinaiGenetics on Saturday, January 25th from 12 to 4 pm to support the @MoebiusSyndrome community! Please wear purple! 💜 RSVP to me at [email protected] ! Thank you!

[MoebiusResearchTrust @MoebiusUK]

Sunday Post article about supporter, Tuesday Mennie, from Aberdeen https://t.co/HUrSaTg9k5

[MoebiusResearchTrust @MoebiusUK]

We've got fundraising and awareness ideas and downloads on the website for MSAD https://t.co/kKjxSsvv4j

[MoebiusResearchTrust @MoebiusUK]

It's nearly time to turn the world purple for Moebius Syndrome Awareness Day! #msad #wesmilefromourhearts

[MoebiusResearchTrust @MoebiusUK]

Thanks to everyone who joined us at the 2019 Conference. We truly are facing the future. #moebiussyndrome #moebiusawareness #wesmilefromourhearts

[MoebiusResearchTrust @MoebiusUK]

We're all organised and looking forward to the conference
@HiltonBhamMet next weekend - there is still (just) time to book - https://t.co/EkGFNtEueV
@MoebiusSyndrome @M4RareDiseases @MoebiusMatters @rarediseaseuk @SyndromeMoebius @MoebiusAfrica

[MoebiusResearchTrust @MoebiusUK]

With less than 4 weeks till the conference - now is the time to make sure you've booked your places https://t.co/EkGFNtEueV . And don't forget the free creche we've arranged with Tinies - https://t.co/c1fYfH2bpq

[MoebiusResearchTrust @MoebiusUK]

This year we are thrilled to welcome Dr. Bryn Webb as a conference speaker - Assistant Professor in the Departments of Genetics and Genomic Sciences and Pediatrics at the Icahn School of Medicine at Mount Sinai in New York. Don't forget to book - https://t.co/OtKxpcnBzz

[MoebiusResearchTrust @MoebiusUK]

The 2019 conference booking form is live - book your places now! https://t.co/OtKxpcnBzz

[MoebiusResearchTrust @MoebiusUK]

We've been having 'technical difficulties' getting the online booking form onto the website - so have popped a downloadable conference form in the meantime as several of you have asked how to book places - just go to the 2019 conference page -https://t.co/EkGFNtEueV