Emily Clarke (she/her) 🧬🦮

Registered Genetic Counsellor @GenePeopleUK. working in the voluntary sector to support the Genetic community. @theAGNC EDI Sub-committee member.

[Unique @Unique_charity]

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

[Haemochromatosis UK @IronOverloadUK]

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

[Sean Cooney @StorytellerSean]

Cafe Etch #Middlesbrough 27th November @WhatsonTeesside @VisitTeesValley @wearembro @TeesTweets @TeesPHI @CafeEtch

[RARE Revolution Magazine® @RareRevolutionM]

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

[Genomics England @GenomicsEngland]

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 👇

[Genomics England @GenomicsEngland]

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.

https://t.co/S3nrMwx1v9

[Unique @Unique_charity]

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!

[NHS England @NHSEngland]

'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.

➡️https://t.co/JGQhPjUJHN

#WorldSuicidePreventionDay

[NIHR Biomedical Research Centre: Moorfields @MoorfieldsBRC]

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.

🔗 https://t.co/5SMQeGGDUY

#NIHR20 #EDI #PPIE

[Unique @Unique_charity]

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: https://t.co/FT2psmXYdg

[ERDERA @ERDERA_org]

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: https://t.co/PWDSffSd6M
#RareDiseases

[Rare Disease Research UK @RDRUKHub]

Are you searching for support, information or connections in the rare disease community?

Raremap helps you find charities, patient organisations and more: https://t.co/0gqAroKCRT

[Simons Searchlight @s_searchlight]

💜 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: https://t.co/37tE8NjZ5Y

[22Q11 Ireland @22Q11_Ireland]

The contribution of copy number variants to psychiatric symptoms and cognitive ability. #ThinkGenetics

https://t.co/Ashs86mxc4

[Genetics in Medicine @GIMJournal]

#Genomic #newborn #screening is expanding worldwide, but policy decisions need rigorous evidence of clinical utility. https://t.co/DM0RT6Rgdu #NBS #C-GUIDE #Clinicalutility

[Unique @Unique_charity]

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: https://t.co/vMY8Me8buQ

[Genetics in Medicine @GIMJournal]

#GeneticCounseling is the strongest predictor of genetic testing completion in Stargardt disease, while racial and socioeconomic disparities continue to limit access & clinical trial participation. https://t.co/ckAPQ9WtR9 #GIMO #ABCA4 #ClinicalTrialRecruitment #HealthDisparities

[Genomics England @GenomicsEngland]

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 👇

[Unique @Unique_charity]

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:
https://t.co/SnZmKC8hzx

[AGNC @theAGNC]

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