
Bardet-Biedl Syndrome UK (BBS UK)
@bbs__uk
UK Charity, supporting people with Bardet-Biedl syndrome, their families, and their carers. Registered Charity Number 1181244.
ID: 2338580244
https://linktr.ee/bardetbiedlsyndromeuk 11-02-2014 15:46:14
942 Tweet
527 Followers
1,1K Following

Contact
@contactfamilies
UK disability charity for all families caring for a disabled child ☎️ support, info & advice ❤️ bringing families together 📢 campaigning for change!
JanineATruthSeeker
@janinek72
IT Project Manager who became a Kombucha Brewer. Enjoys finding the Truth & believes in Peace, love, honesty, good health & Natural Immunity. LCHF for the win!
Fredrik Hollsten
@fhollsten
Spelintresserad specialpedagog med stort intresse för skapande.
National Energy Action
@nea_ukcharity
National Energy Action - the UK's #FuelPoverty Charity. Taking action so everyone can have a warm, safe and healthy home - nea.org.uk
RNC
@rnc_hereford
The Royal National College for the Blind (RNC) is the UK’s leading Further Education College for young people aged 16-25 with visual impairment.
Over The Wall Camp
@overthewallcamp
A place where children with long-term conditions can rediscover the #mischiefandmagic of childhood!
Hector Minto
@hminto
Assistive Technologist, Disability Inclusion Advocate, Lead Evangelist for Accessibility at Microsoft. UK Govt Disability and Access Ambassador for Tech and Web
Priti S Atmakuru
@priti_atmakuru
PhD | rookie centrosome biologist, loyal to cilia & satellites | stem cell biologist | former lab manager | @csir-ccmb | artist | rare ally
Arashdeep Singh🐁🧠🥙
@singharashdeep
Science Communicator Scientist @Researchdiets Interests: Vagus, Microbiota, Nutrition, & Obesity RT/FAV≠Endorsement Alum: @UCalgary @Penn @UF @MonellSc
JUAN CARLOS
@laxsan90250
Healthcare investor. CEO/owner same day/next day/white glove logistics & delivery services. Time critical parts *Lifesciences *,.since 2007.
Sayed Mohammed
@sayed_mohd23
I was born to live and raised to survive. #Qatif #lefthanded.. ﮼سيدمحمد
Fight for Sight previously Vision Foundation
@vision_fdn
Fight for Sight funds the brilliant minds and bright ideas that put change in sight for everyone impacted by vision loss. Our mission: Save sight. Change lives.
Alström Syndrome UK
@as_uk
'Alström Syndrome is a rare genetic condition affecting every organ in the body. ASUK provides support & guidance for those affected.' Tweets by Catherine Lewis
Amanda Harris
@mandalea98
PCD & Children's Respiratory CNS, @NIHRCommunity & @FNightingaleF scholar, Autism Ambassador and Independent Visitor with @theadvocacypeople. Views my own.
Joost Heijstek
@joostwheijstek

We're not on X anymore – formerly @PifOnline
@pifonline
This account has been archived. Follow us on LinkedIn, Bluesky and keep up to date via our websites pifonline.org.uk and piftick.org.uk.
abdulaziz hamad
@abdulaziz0hamad
inst: Instagram.com/3bdulaziz.hk
SWAN UK (syndromes without a name)
@swan_uk
SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
Fiona Copeland BEM
@pcdmum
Mum to adult sons with rare genetic lung condition, Primary Ciliary Dyskinesia. Also interested in running, watching Rugby and F1.
Genetic Alliance UK
@geneticall_uk
National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
Metro Blind Sport
@metrovisports
A London based charity, creating fun, accessible sport and social opportunities for blind and partially sighted individuals of all ages and abilities
Leah x
@leahkenworthy1
#reikihealer #opinionatedtwat
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.
PCD Support UK
@pcd_uk
We talk about Primary Ciliary Dyskinesia (PCD) as widely as possible, and champion research to improve its diagnosis, management and treatment.
Sian Griffiths
@sianmgriffiths

MedicsforRareDisease
@medicsforrare
Excellence in rare disease medical training
Richard Kramer 🇺🇦
@richardkramer_
Ex Chief Exec @sensecharity @SenseInternatl Proud Trustee of @CareTechFdn @en4ei and NED @RCHTWeCare Views my own. Cornwall 〓〓
LOOK
@look_uk
A small but mighty national charity, supporting visually impaired young people to thrive.
NHS South East Genomic Medicine Service
@segenomics
Providing genomic testing across South East. Embedding genomics into routine clinical care to enable faster & more accurate diagnoses & personalised treatment.
Bertrand Knebelmann
@bertperso
travaille à université paris Descartes hôpital Necker
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
Prof Jane Lucas 💙
@janeslucas1
Paediatric Pulmonologist and Professor at University of Southampton; Primary ciliary dyskinesia & all things motile cilia. And some other thoughts, all my own.
S 💫
@s_66ii
الحمد لله على نعمه الكثيره
Dagmar Wachten & lab
@dagmarwachten
@wachtenlab.bsky.social
Lei
@lei87626468

Richards Lab
@richardslabuob
Research into sleep and behaviour in neurodevelopmental conditions led by Professor Caroline Richards @unibirmingham (retweets are not endorsements)
Katie Horton
@biofilmhorton
PhD. BEAT-PCD ECR Rep. Love to 🏃🏼♀️ & 🚴🏼♀️
Marketa Schmidt Cernohorska
@marketaschmidt
Passionate biologist devoted to @centrosome and @microtubules in biophysics and evolution
Alexander T Deng
@alextdeng
NHS #ClinicalAIFellows Programme Lead🤖 & Clinical Genetics Dr 🧬
Bernhard Schermer
@bernhardscherm1
Scientist, MD, trying to decipher molecular mechanisms of kidney diseases. Private, inactive account. 🐘 Mastodon: social.cologne/@cilib
Lucy Hinder, PhD
@lucyhinder
Medical Science Liaison | INFJ | 🇬🇧 🇺🇸 🏳️🌈
Sandeep Singh
@ssingh4416

Rareminds
@raremindsuk
Specialised mental health and wellbeing services for the rare disease community. bit.ly/rarementalheal…
Dr Susi Shanks
@susishanks
Mum of a fun PCD-teen
Romeo
@stoncklover
Crypto bro
Steven Woods
@swoodsbio
Scientist at the University of Manchester focused on cartilage and stem cell research. Gardener in my spare time.
ام عبدالله
@z7vic4seim1fghy
لاحول ولا قوة الا بالله العلي العظيم
Alessandra Boletta
@boletta_lab
Cell Biologist with interest in renal disorders #PKD #cilia #cancermetabolism Ts&RTs=my view
Bosakova_Lab
@michaelabosak
Seeking to understand the universe
Ruth Hirst
@ruthhirst4

Alexandra Claro
@aclama202
Residente Genética Médica
Dr Marie Dunnion
@mariedunnion
Psychologist / Research Fellow @CerebraNetwork @UoB_SoP | Lived Experience Partner (Autism-Friendly Surgeries) @NHS_HW | Associate Lecturer @worcester_uni
عنود الشمري
@noodee1200
أميرة في بيتي وملكه في قلبه وأم لأجمل الجميلين👨👩👧👦
Mohnd Aljabry
@aljabrymohnd

Bilaal Ali
@a30094261
Blind student at Sheffield Hallam studying accounting and finance and love football swimming gym boxing and movies
Ella
@ella_mitchell41

TheRaCil Project
@theracilproject
A European research consortium on Therapies for Renal Ciliopathies. Co-funded by the Horizon Europe programme and UKRI - 16 partners, coord. @InstitutImagine
Lori Harlett
@lharlett17722

Derek Aburto Valencia
@aburto_der27642

KLC
@jurassicdorset
GSD Mama, beach lover and dreamer. “Though she be but little, she is fierce” Shakespeare 🇬🇧
Max Power
@maxp0wer69
Acted like a Nazi; Because they are inherently a NAZI. Thoughts are my own and NOT that of the entire Papichulo Community! I do not provide financial advice.
Aiden Akers
@aiden_aker75804

R_is_for_Rare
@risforrare89018
working to highlight rare genetic and rare health conditions
Young Research Champions West Midlands 💙
@ypsgwmids
NIHR Young Research Champions Group for the West Midlands. We give young people a voice so they can actively contribute their perspectives to health research.
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]
Carla Abreu
@carla_m_abreu
Scientist, Creative, passionate about Life and Nature. Give all my heart. Love any form of art. Love to smile. Love to dance.
NIHR Birmingham CRF
@birminghamcrf
NIHR/ Wellcome Trust Birmingham CRF at BWC provide a high-quality environment enabling patients to take part in experimental/ complex clinical research studies
Computer Science @University of Hertfordshire
@hertfordshirecs
We offer a range of Computer Science undergraduate and postgraduate courses, both campus-based and online distance learning @UniOfHerts #GoHerts
P4Medicine
@p4medicine
Tweets curator: Dr Ella M. Lecturer in Neuroscience (MD, PhD); under #HippocraticOath
Aspens
@aspenscharities
Aspens provides high quality support and care to individuals on the autism spectrum and with learning disabilities and their families, across the South-East.