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
RNIB
@rnib
We’re the Royal National Institute of Blind People. Header photo: two young people laugh as they play video games.
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
James Ennis
@jamesennis90
Northern Ireland Rep for Cystinosis Ireland / Cystinosis Network Europe (CNE). Rare disease advocate, Cystinosis & Kidney transplant patient. Views are my own
Hector Minto
@hminto
Assistive Technologist, Disability Inclusion Advocate, Lead Evangelist for Accessibility at Microsoft. UK Govt Disability and Access Ambassador for Tech and Web
Optelec UK
@optelecuk
Global manufacturers and retailers. Improving the quality of life of #VisuallyImpaired and #blind people - reaching out with simple and effective solutions.
easyfundraising
@easyuk
We turn your daily shopping into everyday magic! Together we've raised over £48.9M for 190,000 UK causes so far.
Wolverhampton Grand
@wolvesgrand
Theatre for everyone in the heart of Wolverhampton - the home of magical entertainment! ✨
Disability History
@ukdhm
UK Disability History Month's motto is: Celebrating our Lives – Challenging Disablism – Achieving Equality #UKDHM to share
Evelina London
@evelinalondon
Caring for children and families in Evelina London Children's Hospital, @RBandH and in the community. Tweeting 9am-5pm, Mon-Fri Part of @GSTTnhs and @NHSuk
Goalball UK
@goalballuk
National Governing Body and proud charity for the Paralympic sport of goalball in the UK Registered Charity - England & Wales No. 1136892 Scotland No. SC045967
CureCHM
@curechm
The Choroideremia Research Foundation supports research, education, and advocacy regarding CHM, a hereditary retinal-degenerative disease that causes blindness.
Amanda Harris
@mandalea98
PCD & Children's Respiratory CNS, @NIHRCommunity & @FNightingaleF scholar, Autism Ambassador and Independent Visitor with @theadvocacypeople. Views my own.
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This account has been archived.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.
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.
Louise Farrow 💙
@amli256
Mum to 2 daughters who continue to amaze, challenge and inspire me. Proud Macmillan Lead Cancer Nurse/HON Cancer Services @Medway_NHS_FT views my own.
Aaron Bell
@ajayding
Paediatric cardiologist | NHS consultant | @evelinalondon | occasionally running | views my own 🇳🇿
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.
James Williams
@james_d_w
@KCLstemcells & Watt Lab PhD student Using stem cells to study Cilia, Epithelia & Development. 🔬🏃♂️🎸🌱⚽
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.
Fiona Musgrove
@fionamusgrove
enjoy life as you can whether you can see it or follow my adventures walking through France towards Rome with the fab Richard as two blind mice
Lesley Walker
@lesleywalker17
Media @GSTTnhs. Lover of secret sparkle. And pockets. My views.
Synapptic
@synapptic1
Here at Synapptic, our mission is to design easy-to-use products that ensure people with sight loss have access to mainstream mobile technology.
Visionary
@visionary_uk
Visionary is a membership organisation for local sight loss charities.
UCAN Productions
@ucanproduction
UCAN Productions is a performance and creative arts charity for blind and partially sighted children, young people and their friends.
Hannah Scott
@hannahm_scott20
Research assistant @QMUL | PhD candidate @CSI_KCL
Be My Eyes
@bemyeyes
Be My Eyes connects 700,000+ blind and low-vision users with 7.5M volunteers and companies via live video and AI, available in 150+ countries, free for users.
Natalie Frankish
@do_scotland
Policy & Engagement Manager for Scotland Genetic Alliance UK & Rare Disease UK Views my Own
Kasia Pirog
@kasiapirog1
Geneticist, cartilage biologist, mountaineer. Senior Lecturer at Newcastle University. All views my own.
MedicsforRareDisease
@medicsforrare
Excellence in rare disease medical training
Sight Life (formerly CIB)
@sightlifewales
Sight Life (the new name of Cardiff Institute for the Blind) helps people with a sight condition to enjoy an active, social and fulfilling life.
Lucy Dixon
@lucyd28
Chair of @PCD_UK. Day job = NHS researcher. Unhealthy attachment to Gilmore Girls, Wales & coffee. Love mountains, lungs permitting. Views my own.🏴
Running On Air
@runningono2
Running On Air, Inc. is a 501(c)(3) working to improve the lives of those on supplemental oxygen and those with lung diseases and rare diseases
David
@david_daprince
Innovation leader, passionate about Accessibility & Inclusion and all things technology.
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
Garfield Weston Foundation
@westonfdn
A family founded grant-maker supporting a wide range of charities across the UK, with grants totalling over £100 million last year.
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.
Esme's Umbrella
@esmesumbrella
Esme's Umbrella Charity raising awareness of Charles Bonnet Syndrome (CBS), which causes visual hallucinations after sight loss
Matt Harrison 🧑🏻🦯
@mattharrisonpro
East Midlands Engagement Manager with Thomas Pocklington Trust. registered blind with Stargardt’s Disease. all views my own (if somewhat blurred).
Bernhard Schermer
@bernhardscherm1
Scientist, MD, trying to decipher molecular mechanisms of kidney diseases. Private, inactive account. 🐘 Mastodon: social.cologne/@cilib
Neurodiversity Celebration Week
@ncweek
Neurodiversity Celebration Week aims to bring about worldwide neurodiversity acceptance, equality and inclusion in schools and workplaces.
Julia Rausing Trust
@juliartrust
Charitable fund to realise the philanthropy of Hans Rausing and honour the memory of Julia Rausing supporting Health, Welfare & The Arts. Tweets by grants team.
(Elizabeth) Emma Palmer (she / her)
@emmagenetics
Clinical Geneticist and researcher. Aims to do inclusive research enabling person-centered, strengths-based rare condition care and support. Together we can 💜
Shahida Moosa #StopTheGenocide
@shahida_moosa
Professor & Head of Medical Genetics @ TBH-passions= #genomics & caring for my patients with #RareDiseases in Africa 🇿🇦🇵🇸 @RareGenomicsRSA
Sarah Wynn
@swynn_unique
CEO @unique_charity. All views my own.
Dr Saghira Malik Sharif
@saghiramsharif
PhD, Principal Genetic Counsellor | Prenatal Genetics | Passionate for enhancing equality, diversity and inclusion in Genomics🧬
janhansen
@jn_hansen
Shedding light on primary & motile #cilia + Developing open-source image analysis tools for biologists (CiliaQ, SpermQ, AdipoQ, MotiQ, FreQ,...).
Theodore G. Drivas 🏳️🌈
@tdrivas
Physician Scientist, Adult Medicine-Trained Clinical Geneticist, and Cilium Enthusiast at the University of Pennsylvania. Moving to @tdrivas.bsky.social
Rareminds
@raremindsuk
Specialised mental health and wellbeing services for the rare disease community. bit.ly/rarementalheal…
Oxford-Harrington Rare Disease Centre
@ohraredisease
Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
Buddies for All CIC
@buddiesforall
Buddies for All CIC. Providing online, telephone and face-to-face support to deaf and disabled people in London. Founder @BuddyBourroughs
Blind Sanity
@blindsanitypod
A Podcast for the blind and low vision community; providing insights and support to make life easier and more enjoyable. E-Mail at [email protected]
Amy Clapp
@amyclapp20
Loving life… family, fun & cocktails🍹 🏄♀️🎢🤘
Marielle Perraut
@maz_perraut
Assistant Chief Nurse. Frog in London. Keen crafter and DIYer. Proud rat mum. All views are my own
World Blind Herald [email protected]
@blindherald
The official Twitter feed of the World Blind Herald. A world of perspective from the global blind community. published weekly.
Gabrielle Leen
@gabrielleleen
She/Her. Trainee Clinical Psychologist at the University of Surrey. Views are my own.
Steve Johnston, MD
@stevejohnstonmd
My son is going blind. And I’m going to stop it. Dad/Doctor/Man on a mission. Supporting ground breaking research + giving EPIC visual memories
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
CilNetNL
@cilnetnl
Ciliopathy Network Netherlands
Charlotte Boulton 🌎💙✌🏼
@charlotteboult4
23✌🏼 living my best life, 💙🌎George💙🌎 17/10/14, following my dreams, “When you feel like stopping, think why you started”
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]
P4Medicine
@p4medicine
Tweets curator: Dr Ella M. Lecturer in Neuroscience (MD, PhD); under #HippocraticOath
Brais Bea Mascato, PhD
@mascatb
Data scientist , software dev and bioinformatician. Fascinated with #ML and #genIA.
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.
Avey Bhatia
@avey_bhatia
Chief Nurse at Guy’s and St. Thomas’ Interim President of the Florence Nightingale Foundation. Trustee - St John of Jerusalem Eye Hospital Group
Dr Amit Patel
@blinddad_uk
Author | DEI Consultant | Speaker | Disability Activist | Trustee | #DogSquad | Book: @LaurieEmTweets #KikaAndMe | Media Enq: [email protected]
Fiona Sandford
@sandford_fiona
Tweets, thoughts, comments etc. - all my very own. Happy stuff. CEO @Visionary_uk