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The AAF conferences get better each year : 2024 was the best ever ! @AmyandFriends @GSTTnhs @GSTT_SpecAmbu @EvelinaLondon
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shehla mohammed 💙🧡
661 posts
shehla mohammed 💙🧡
@snmcb
Paediatric Geneticist, partial to rare and ultra rare disorders, mature student of the cello and kick boxing! Views my own
Beigetreten Mayıs 2011
467 Folgt283 Follower
How St Thomas’ Rare Diseases Centre helps families thrive
Guy's and St Thomas' NHS Foundation Trust | 27 Feb 2026
linkedin.com/pulse/how-st-t…
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We're pleased to announce the launch of a RDCN for individuals with Ectodermal Dysplasia (ED) & related conditions. The RDCN brings together a group of expert providers committed to improving patient care, advancing research & increasing awareness. rb.gy/ee7u1w
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@StephenORahilly @Farooqi_Lab Many congratulations Sadaf : richly deserved !
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Congratulations Sadaf! @Farooqi_Lab
Inst Metabolic Science-Metabolic Research Labs@IMS_MRL
Congratulations to Professor Sadaf @Farooqi_Lab as Joint ‘Endocrinology Across the Life Course Award’ winner from @ESEndocrinology & European Society for Paediatric Endocrinology (ESPE). mrl.ims.cam.ac.uk/news/professor…
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Summary !
youtu.be/GAglOeQUamE
Staying calm for lift off: it’s only 1.5 km, 120 mph 0-60 mph in 10 secs!
YouTube
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Velocity zip wire update : we did it with the parents and one of my patients which made it so so special! Incredible support from so many. We have raised over £10K for Amy and Friends so far !
Thank you all so much. @GSTT_SpecAmbu @GSTTnhs @AmyandFriends
shehla mohammed 💙🧡@snmcb
A notch up from the abseil down St Thomas but also for a good cause. Thanks for any support you can offer ! @GSTT_SpecAmbu @GSTTnhs @AmyandFriends justgiving.com/page/shehla-mo…
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shehla mohammed 💙🧡 retweetet
Dr Shehla Mohammed, consultant in paediatric clinical genetics, contributed to the Plan. She said: "Since its launch there have been improvements in treatment and awareness of rare conditions, but there is more to be done to support patients with rare and ultra rare disorders.”
Department of Health and Social Care@DHSCgovuk
Read the England Rare Diseases Action Plan 2025 gov.uk/government/pub…
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Our bespoke Rare Disease Centre enables paediatric, transition and adult patients to be seen by multiple experts ensuring continuity of care, access to therapies and an international collaborative network @GSTTnhs @GSTT_SpecAmbu @EvelinaLondon
Guy's and St Thomas'@GSTTnhs
The Rare Diseases Centre at St Thomas' Hospital is one of the only units in the UK, providing comprehensive care for people who have rare diseases
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@JannieBroadcast @AmyandFriends @ZipWorldUK @PAK1 @drolgathomas @crossovernat @SteveNy00177589 @paupoljr @DebThomasCopy @LoveCelticWoman @EllenAngharad @famousamos111 @LolaGanzarolli Thanks for the hot tips around take off and landing !!
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@snmcb @AmyandFriends @ZipWorldUK @PAK1 @drolgathomas @crossovernat @SteveNy00177589 @paupoljr @DebThomasCopy @LoveCelticWoman @EllenAngharad @famousamos111 @LolaGanzarolli Brilliant Shehla xx
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This was a few years ago…. But this March I am doing it again @ZipWorldUK to raise vital funds needed for @AmyandFriends supporting families with children with DNA repair disorders; Here is the link; Here is the link for my Just Giving page; justgiving.com/page/jannie-ra…
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@AmyandFriends @JannieBroadcast @ZipWorldUK @PAK1 @drolgathomas @crossovernat @SteveNy00177589 @paupoljr @DebThomasCopy @LoveCelticWoman @EllenAngharad @famousamos111 @LolaGanzarolli I’ll be joining you too , hopefully smiling to hide the totally terrifying endeavour for a brilliant cause !
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@JannieBroadcast @ZipWorldUK @PAK1 @drolgathomas @crossovernat @SteveNy00177589 @paupoljr @DebThomasCopy @LoveCelticWoman @EllenAngharad @famousamos111 @LolaGanzarolli Fabulous pic Jannie ❤️
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A notch up from the abseil down St Thomas but also for a good cause. Thanks for any support you can offer ! @GSTT_SpecAmbu @GSTTnhs @AmyandFriends
justgiving.com/page/shehla-mo…
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The 12 days of genomic medicine: Xmas 2024
12 Pts in Fragile X research
11 Undergrad lectures
10 Service developments
9 Academic papers
8 Media broadcasts
7 Postgrad lectures
6 National Clinical Research projects
5 Specialist clinics
4 books
3 grants
2 ACL
1 ACF
= Knackered!
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Happy to share the news that I have been promoted to ‘Professor of Medical Genetics’ The University of Sheffield Thank you to colleagues, my family and most importantly, the patients and families that underpin everything I do. @SCYPHeROfficial @shefunihealth @SheffChildrens
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A privilege to be part an amazing group of likeminded clinicians and scientists working in a true collegiate spirit to get the best outcomes for the patients we look after @GSTTnhs @EvelinaLondon
Amy and Friends@AmyandFriends
Some of our wonderful scientists/clinicians from across the world who dedicate the lives to helping our families - this phenomenal team deserve the biggest clap 👏 ❤️💙💛👏
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This award recognises their exceptional skills, knowledge and expertise and the central role of nurses in the development of innovative services that improve co-ordinated care for those with rare and ultra rare diseases. @AmyandFriends @GeneticAll_UK
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Huge congratulations to Paula Sullivan and Phillipa Sellar, nurse practitioners in our Rare Diseases Centre, who have been awarded the prestigious title of Queen’s Nurse from the Queen’s Nursing Institute.@GSTTnhs @GSTT_SpecAmbu @EvelinaLondon @NHSEngland
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We discussed our approach to a be-spoke management plan for patients and the key role of a dedicated specialist nursing team as well as clinical observations and challenges at Year 1 whilst reflecting on future plans.
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It was an honour to be invited to the recent Bloom Syndrome Patient & Family Conference in Frankfurt. The UK Blooms RDCN highlighted role of the specialist MDT clinics in the development of integrated care pathways @GSTTnhs @GSTT_SpecAmbu @EvelinaLondon
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With over a 100 attendees from 13 countries we had a very informative weekend of talks & workshops leading to many new and innovative collaborations
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