Registered Genetic Counsellor @GenePeopleUK. working in the voluntary sector to support the Genetic community. @theAGNC EDI Sub-committee member.
Sheffield UK
Joined November 2015
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- Following1.1K
- Followers813
- Likes6.6K
Emily Clarke (she/her) 🧬🦮 retweeted
Do you act as an advocate for your child? We want to hear about your experience.
This research project aims to learn about your personal experiences of acting as an advocate for your child via an online interview.
Email Kitty at [email protected] to get involved
Emily Clarke (she/her) 🧬🦮 retweeted
We’ve been working on something super exciting behind the scenes, and we can finally share it with you all TOMORROW!
All eyes on our website & social media channels from 9am 👀 Something big is coming!
#Haemochromatosis #HaemochromatosisAwareness #IronOverload #TheCelticCurse
Emily Clarke (she/her) 🧬🦮 retweeted
Cafe Etch #Middlesbrough 27th November @WhatsonTeesside @VisitTeesValley @wearembro @TeesTweets @TeesPHI @CafeEtch
Emily Clarke (she/her) 🧬🦮 retweeted
For 15 years, we've worked to improve information and support for people affected by genetic conditions.
A heartfelt thank you to everyone who has supported our journey, including Alastair Kent OBE for his chairmanship.
Here's to the next chapter!
@GenePeopleUK
#GenePeople #RareRevolution
Emily Clarke (she/her) 🧬🦮 retweeted
What causes ReNU syndrome? ReNU syndrome was discovered by scientists from multiple research teams using data from the National Genomic Research Library, and is thought to be one of the most prevalent known neurodevelopmental disorders. Dr Nicky Whiffin explains the science 👇
Emily Clarke (she/her) 🧬🦮 retweeted
What does a clinical scientist do?
In our latest blog, Nicola Marchbank, Clinical Scientist on the Generation Study, explains more about the vital role clinical scientists play in genomic testing, linked below.
ow.ly/Won450ZZcCH
ALT Headshot of Nicola Marchbank against a light yellow background.
Emily Clarke (she/her) 🧬🦮 retweeted
The Unique team have pulled out their denim for @jeansforgenes Week to help change the lives of the 1 in 25 Children in the UK affected by a genetic condition.
Jeans for Genes UK are an incredible organisation so get on your jeans and help spread the word!
Emily Clarke (she/her) 🧬🦮 retweeted
'Opening Doors’ is a suicide prevention learning resource to support NHS staff on how to recognise signs of suicidal distress in themselves and others.
The training also signposts to the help that is available.
➡️learninghub.nhs.uk/catalogue…
#WorldSuicidePreventionDay
ALT In a hospital office, a female healthcare worker comforts a male healthcare worker. Copy reads: 'Opening Doors' - a suicide prevention learning resource. NHS logo appears in the top right corner.
Emily Clarke (she/her) 🧬🦮 retweeted
Explore our free on-demand PPIE and EDI courses, open to all researchers
Involving patients and the public boosts research quality and ethics. Engaging them in decision-making leads to innovative solutions and improved outcomes.
🔗 buff.ly/1qK8d2E
#NIHR20 #EDI #PPIE
ALT Promotional graphic from the National Institute for Health and Care Research (NIHR) advertising free on demand PPIE and EDI courses for researchers. The graphic features a photograph of people seated in a group discussion and includes the text: "open to all", "PPIE and EDI free on-demand courses available for researchers", and "NIHR Biomedical Research Centre: Moorfields". A "20 Years" anniversary logo appears in the bottom right corner.
Emily Clarke (she/her) 🧬🦮 retweeted
Today is Duchenne Muscular Dystrophy (DMD) Awareness Day!
Did you know: Around 2,500 people are living with DMD in the UK, and 1 in 3,500
live male births are affected worldwide.
Learn more at @DuchenneUK's website: duchenneuk.org
ALT Bright green background with bold text promoting Duchenne Muscular Dystrophy Awareness Day on 7th September 2026 and a white unique logo.
ALT Explanation of Duchenne Muscular Dystrophy (DMD) as a progressive muscle weakness disease caused by lack of dystrophin affecting skeletal, heart, and lung muscles.
Emily Clarke (she/her) 🧬🦮 retweeted
Applications are now open for the EURORDIS Open Academy x ERDERA Schools! 🎓 Build the skills and networks to engage with researchers, regulators & policymakers 📍 Barcelona, 7-10 June 2027 ⏰ Apply by 16 October 2026 🔗 Learn more: loom.ly/F3Ka2j8
#RareDiseases
Emily Clarke (she/her) 🧬🦮 retweeted
Are you searching for support, information or connections in the rare disease community?
Raremap helps you find charities, patient organisations and more: raremap.co.uk/
Emily Clarke (she/her) 🧬🦮 retweeted
💜 Your experience can inspire change.
We’re inviting individuals and families affected by rare genetic neurodevelopmental disorders to share their stories 🧬 Help raise awareness, build community, and inspire others.
Share your story: bit.ly/ShareYourRareStory
Emily Clarke (she/her) 🧬🦮 retweeted
The contribution of copy number variants to psychiatric symptoms and cognitive ability. #ThinkGenetics
pmc.ncbi.nlm.nih.gov/article…
Emily Clarke (she/her) 🧬🦮 retweeted
#Genomic #newborn #screening is expanding worldwide, but policy decisions need rigorous evidence of clinical utility. bit.ly/4xJO9t0 #NBS #C-GUIDE #Clinicalutility
Emily Clarke (she/her) 🧬🦮 retweeted
Do you find navigating the complicated benefits system difficult?
@renaissance_uk are hosting several webinars that focus to help. You can register for each of these events direct from Renaissance Legal's webite here: renaissancelegal.co.uk/event…
Emily Clarke (she/her) 🧬🦮 retweeted
#GeneticCounseling is the strongest predictor of genetic testing completion in Stargardt disease, while racial and socioeconomic disparities continue to limit access & clinical trial participation. bit.ly/4h5jZM2 #GIMO #ABCA4 #ClinicalTrialRecruitment #HealthDisparities
Emily Clarke (she/her) 🧬🦮 retweeted
Raremap is a fantastic new resource designed to make it easier to discover, find and connect with others in the rare condition ecosystem. Find out more in the post below 👇
The rare disease landscape can be complex to navigate – that's why we've collaborated with @lifearc1 to launch Raremap. It's a searchable directory of rare disease organisations so you can find out who does what and how to connect. Visit Raremap now: tinyurl.com/3atbumrt
Emily Clarke (she/her) 🧬🦮 retweeted
Could you help improve genomic diagnostic reports and the way genomic diagnoses are communicated to families?
Take part in a short survey to see what could be improved:
forms.cloud.microsoft/pages/…
Emily Clarke (she/her) 🧬🦮 retweeted
While pride month may be ending the AGNC EDI subcommittee have been reflecting on how we can show up for our LGBTQIA+ colleagues and patients through out the year. Please see our statement in support of Transgender, Gender Diverse and Sex Diverse Patients.
#pridemonth
