Tuberous Sclerosis Association (@uktsa) Twitter Takipçileri • TwiCopy

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@contactfamilies

UK disability charity for all families caring for a disabled child ☎️ support, info & advice ❤️ bringing families together 📢 campaigning for change!

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TSC Alliance

@tscalliance

The TSC Alliance is a source of hope and support for people with tuberous sclerosis complex so they can live their fullest lives. #HopeNoMatterHowComplex

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Epilepsy Action

@epilepsyaction

Epilepsy says stop. We say go.

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Unique

@unique_charity

Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner.

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EURORDIS-Rare Diseases Europe

@eurordis

An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.

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Rhys Thomas

@dr_rhys

Consultant Neurologist and Epilepsy Neuroscientist: Mild mannered doctor by day; mild mannered doctor by night

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Together for Short Lives

@tog4shortlives

National charity for children's palliative care. Making a lifetime of difference to seriously ill children and their families.

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Laura Buckner

@lgbtx

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Sibs

@sibs_uk

UK charity for brothers and sisters of disabled children and adults.

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SUDEP Action

@sudepaction

Dedicated to raising awareness of epilepsy risks & tackling all #epilepsy deaths including #SUDEP Get in contact: [email protected]

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El Duderino

@duderino199

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TheLAMFoundation

@lamfoundation

Delivering facts about #LAM #RareDisease and The LAM Foundation. We're dedicated to funding research, advocacy and awareness to improve the QoL for all LAM pts.

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Remember A Charity

@remembercharity

Cross-charity campaign raising awareness of the importance of gifts in Wills to good causes across the UK.

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ShaWard

@shaward

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Noella Ahn

@noellaahn

NZ Nephrology Trainee in London, building a love for renal genetics 🧬

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Caitlin C. Clements

@c_c_clements

@ccclements.bsky.social Director of the BRAIN Lab @NotreDame Psych | Study autism, reward processing, & rare genetic syndromes

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Neveen Soliman

@neveenase

Professor of Pediatrics Pediatric Nephrologist Passionate about #RareDiseases Fascinated by #Genomics Editor-in-Chief Journal of Rare Diseases #JORD

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Epilepsy Research Institute

@epilepsyinst

Radically advancing epilepsy research. Join the #Onein100 campaign today to help raise the profile of epilepsy and drive research forward. @ResearchNetERI

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Wales Gene Park

@walesgenepark

From January 2025, please find us on Instagram @walesgenepark and LinkedIn 'Wales Gene Park / Parc Geneteg Cymru'

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Alice Tribedi Fun Dance Exercise Coach

@vithecleaner

@_UKCoaching Community Coach Award winner 2021. Fun Dance Exercise Coach - for over 60's able & less able - Care Home Entertainer - Dancer - Stand up Comedy

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Ana Mingorance

@cnsdrughunter

🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others. @cnsdrughunter.bsky.social

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David_Suchet

@david_suchet

British character actor, best known for the little Belgian, Poirot, but many other characters too.

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kunj kinger

@kingerkunj

Ai engineer by passion, data engineer by profession

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Beacon for Rare Diseases

@rarebeacon

Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.

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Rhiannon Crowle

@rhiannoncrowle

I am the one and only! I love more than most. I Appreciate The World & Despise Cruelty! Peace & Love ✌

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Kasia Pirog

@kasiapirog1

Geneticist, cartilage biologist, mountaineer. Senior Lecturer at Newcastle University. All views my own.

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[email protected]

@saboohalomari

Obstetrician & feminist.Compassionate women's rights champion. Determined to be a legacy leaver.

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KGalla

@kgalla_lk

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Vocal

@letsgetvocal

Not-for-profit, NHS organisation bringing people & research together

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Torie Robinson 🇺🇦

@torierobinson10

@EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own

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ResearchNet ERI

@researchneteri

Researcher Network of @EpilepsyInst. Radically advancing research into epilepsy. For #epilepsyresearch funding and capacity building opportunities join The Hub

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Demetriades Lab

@demetriadeslab

The Demetriades Group @MPIAGE. We study Cell Growth and Nutrient Sensing via the TSC/mTOR network in health and in age-related diseases. Tweets by CD.

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RARE Revolution Magazine

@rarerevolutionm

Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]

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Pende Mario

@mariopende

Works at Necker Children Hosp./Inserm/Paris University. Studies cell growth control by nutrients and rare diseases of growth and metabolism. Cherishes ecology.

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DanaCook

@01xhemlq8kjn2k

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Dakota :)

@d_heartstopper_

FOREVER NO.20 R.I.P Diogo Jota YNWA

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Miss Speake

@missspeake1

Family Support Worker An activist for giving children experiences and a voice. Recognising the often over looked essential work of support staff

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Cody Higton

@codyhigton09

Political || Left Economically, Progressive Socially || Advocate for Freedom, Justice and a Egalitarian Society || Divide ≠ Freedom ||

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Emily Stearn

@emilynstearn

Senior Health Reporter @MailOnline // Got a story? Get in touch/say hi: [email protected] (views my own, headlines not)

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Euro Rare Diseases

@pooja_r12

Program Manager C2p Forum Rare diseases and Orphan drugs

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Tim

@lingche35503298

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noname

@kmedps16

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B

@inbellaland

artist. bodybuilder. audhd. book lover. free Palestine. no terfs/swerfs.

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oma14155picdreams

@omapicdreams

Amauter photographer and patient who suffers from scleroderma. Please help me with my therapy and feeding stray animals by purchasing a photo. Thank you.

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Manchester Rare Conditions Centre

@mft_imrare

Official Manchester Rare Conditions Centre account. Improving lives of people with rare conditions

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Erika Krull

@krull_erika12

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Skip

@famglory1

Just here for fantasy football & insider trading

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UK Rare Epilepsies Together (UKRET)

@ukret_

Network of patient advocacy groups driving change for everyone living with rare and complex epilepsies in the UK

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Grace keys

@keys_grace2720

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Rakesh M Badami

@rakeshmbadami

Working

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Amanda Groombridge - Team Endeavour

@fortyii

Proud Mother to the brightest star in our Universe.Home Ed,Design,Art,Space, STEAM,Horticulture.Caring for a 'Rare Zebra',trying to make all her days Happy ones

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Ionut Nedelcu

@ionutnedelcu5

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Flavi

@flavifs_

🔬🐁

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Laurie Mason

@lauriem40848142

Mother of dogs, experimenter with gin, zero tolerance for tyranny & bullshit

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Lei

@lei87626468

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Mary Vasseghi

@vasseghimary

PhD ing Tuberous Sclerosis Complex (TSC) Trinity College Dublin & FutureNeuro. ITHACA ePAG. Patient advocate Sudden Cardiac Death (SCD) prevention

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Julie Ruth

@julieruth556141

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Elaine #justiceforClive🌹 A Conscience Manual

@elainec09261846

Avoidable Death DANSHELL systematic failures idep Rev 10 national key findings 52 RecS #LD #epilepsy #cpap #CQC #coroners @RCPath @rcpsych #safegarding #police

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