Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
ID: 2974495097
http://linktr.ee/CamRARE 12-01-2015 11:46:24
6,6K Tweet
7,7K Followers
6,6K Following
Sebastian Salek
@sebastiansalek
Labour councillor and ex-political journalist. Newsletter explaining the laws MPs are voting on each week: clearthelobby.co.uk
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
Unique
@unique_charity
Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner.
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.
UCL School of Pharmacy
@school_pharmacy
Bringing health to the world since 1842. Part of @ucllifesciences and @ucl.
Yoni - יוני (and Rebecca too)
@primary_immune
Human. Jew. Israeli. הודו לה' כי טוב כי לעולם חסדו Closed on Shabbat
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Science at the Natural History Museum
@nhm_science
News from 350+ scientists @NHM_London has 80 million specimens that hold the information we need to provide solutions from and for nature
Dr Kerry Montgomery
@kmonty83
Research Fellow at the Centre for Appearance Research Current areas of research: visible difference and genetics- factors that influence family planning.
ASEICA
@aseicanews
ASEICA. Asociación Española de Investigación sobre el Cáncer. Spanish Association of Cancer Research. ¡Únete! Join us!: aseica.es/hazte-socio
Ethan Perlstein bio/acc
@eperlste
ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, ceo @endrarediseases, solo vc @AngelList, evo pharmacologist, mTOR worshipper, cofounder of K&L, $CURES
ESPE
@eurospe
The European Society for Paediatric Endocrinology (ESPE), tweeting the latest Society news.
Neurofibromatosis Network
@nfnetwork
Neurofibromatosis (NF) Network is the national non-profit serving individuals affected by neurofibromatosis. Leading NF Advocacy, Building NF Community.
Rare Disease UK
@rarediseaseuk
National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
GrauperaLab
@marionagraupera
Phacilitate
@phacilitate
Leading members network for life science executives and investment professionals working in 🧬#AdvancedTherapies #biotech. Est. 2001
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.
Cambridge University Hospitals NHS
@cuh_nhs
We run the world-leading hospitals Addenbrooke’s and The Rosie. We’re unable to offer medical advice on our Twitter channel.
Coralie Bouillot
@cobouillot
Passionnée par la médecine...donc la santé...et forcément l'innovation qui va avec :-) Pro vax, pro masques et antifakemed 😎#Eular #ERNReConnet #EMA
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.
Hope Winter
@hopemusicuk
Singer | Songwriter
Stephanie Fischer
@rarepov
#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
ASGCT
@asgctherapy
Advancing knowledge, awareness, and education leading to the discovery and clinical application of genetic and cellular therapies to alleviate human disease.
Genomics England
@genomicsengland
We’re working to enable faster and deeper genomic research, to bring genomic healthcare to all who need it.
Genomics Education
@genomicsedu
NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
Peter Morgan
@pmzepto
Founder & CEO @ Deep Learning Partnership. Development and application of artificial intelligence, #AI4Business #AI4Science.
MedicsforRareDisease
@medicsforrare
Excellence in rare disease medical training
KRIII Visitor Centre
@kriiicentre
Visit the multi-award-winning exhibition about Richard III’s life, death & the most incredible archaeological detective story ever told…
LEO Pharma
@leohealthyskin
LEO Pharma's global feed. Tweeting ab dermatology news & info that help ppl achieve healthy skin. Please see leo-pharma.com/social-media-p….
This Girl Can
@thisgirlcanuk
No one gets to choose how you exercise other than you. And whatever that looks like, we think it’s worth celebrating #ThisGirlCan. Powered by @TNLUK.
Cavendish Laboratory
@deptofphysics
The Cavendish Laboratory, Department of Physics at University of Cambridge. At the forefront of discovery in physics since 1874.
Duncan Craig
@duncancraigbath
Dean of the Faculty of Science, University of Bath. Drug delivery scientist, director of Gustoceutics. All views my own.
Anna4Labour
@anna4labour
Your Labour and Co-op candidate for Mayor of Cambridgeshire and Peterborough Promoted by Matt Reilly at Unit 5, Swan Court, Forder Way, Peterborough, PE7 8GX
MRC-LMB Cell Biology
@cellbiol_mrclmb
We aim to understand the molecular organisation of cells and organisms. Please follow us on bsky.app/profile/cellbi…
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
Linseigh✨
@linseigh
Actress, singer, writer, & patient advocate. Disability Champion Award Winner @thebbtas. 2nd Cover Faye & Tina @thedriftersgirl. Rep. @cowleyknoxguy.
Dervis Salih
@dervissalih1
Scientist studying molecular links between Alzheimer's, Ageing, microglia & diet @UCL @UKDRI @ARUKnews #Dementia Trained @BabrahamInst @Cambridge_uni @Stanford
Torie Robinson 🇺🇦
@torierobinson10
@EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
ArkaitzCarracedoLAB
@arkaitzlab
Tweets by Arkaitz Carracedo. Now in Bluesky. @arkaitzcarracedo.bsky.social
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Alejo Rodriguez-Fraticelli, PhD
@alejofraticelli
Quantitative analysis of aging/cancer heterogeneity - @fraticellilab @icreacommunity @IRBbarcelona @ERC_research @criscancer @CaixaResearch 🇦🇷🇪🇺🇺🇸
Josep Carreras Leukaemia Research Institute (IJC)
@carrerasijc
🔬 International research institute advancing studies on #leukaemia, #lymphoma, and other #hemopathies. Centre of Exellence Severo Ochoa and @iCERCA
Darwin Tree of Life
@darwintreelife
Generating genomes for 70,000 species of animals, plants, fungi and protists in Britain & Ireland. Engage with us by tagging us and commenting! We'll RT.
CellSig_Lab
@cellsigl
CellSig is led by Bart Vanhaesebroeck. We aim to improve understanding & drug targeting of the PI3K/PTEN pathway in cancer & beyond. #PI3Kδ #PI3Kactivators
Johanna Joyce
@johanna_a_joyce
This account is not active. You can find me at @johannajoyce.bsky.social 🦋
Chromosome 22 Central
@c22central
🧬C22C official. Support & info for chromosome 22 disorders. 22q11-, 22q11Dup, Emanuel Syndrome, PMS, 22q13-, Trisomy 22, Cat Eye Syndrome #c22c #genetics🧬
The ReNeural Project
@reneural
Covering the ongoing biomedical revolution emancipating humanity from disease and disability, with emphasis on brain and spinal cord disorders. #Transhumanism
Katie Waller
@k_a_waller
Head of Patient Programmes @ The Lily Foundation. All views are my own.
PIPgen
@pipgen_itn
PIPgen is an ITN @MSCActions funded by the @EC_H2020 focused on understanding the PI3K/PTEN pathway on monogenic rare diseases and cancer
Ashish Marwaha BMBCh, MA, PhD, FABMGG,FCCMG, FRCPC
@drashm2
Clinical Medical Geneticist 🇨🇦, immunogenetics, #T1D polygenic risk. #raredisease clinical trials. Tweets=own opinion
Jon Needham
@jonjayneedham1
#ThisLittleLad - 'Jon Needham: the man who went to hell and back as a child - and now fights for all rape victims' - The Guardian. - Own views #NeverGiveUp✊🏼
AIAF APS
@aiafaps
L'Associazione Italiana Anderson-Fabry APS è vicina ai pazienti Fabry e ai loro familiari per migliorarne la qualità della vita.
Ry Leahy
@ryscicomms
Science Communications for Advanced Therapies - Cell & Gene Therapy - Rare Patient (EoE) @phacilitate / #cellltherapy #genetherapy #firstgenacademic
CHIA Cambridge
@chia_cambridge
Centre for Human-Inspired Artificial Intelligence @Cambridge_Uni Advancing AI for the benefit of humanity
SafeHaven4Caitlin
@sh4caitlin
Working hard to create a SafeHaven4Caitlin before it's too late. gofundme.com/f/SafeHaven4Ca…
MRC NMGN Cancer Cluster
@mrc_nmgn_cancer
Research cluster in the @MRCMouseNetwork, working with @MRCHarwell to improve the understanding and treatment of human cancer using complex #MouseModels
MRC NMGN Haem Cluster
@mrc_nmgn_haem
Research cluster in the @MRCMouseNetwork, working with @MRCHarwell to develop novel tools to model normal and perturbed haematopoiesis for clinical benefit
CPNN+
@cpnn_uk
The UKRI Chronic Pain Neurotechnology Network+ is an EPSRC-funded UK community of researchers, clinicians and technologists.
Habibah Agianda, MD
@habibahagianda
MD @fkkmkugm | MMSCI @harvardmed | Awardee @LPDP_RI | Enhancing the diagnostic framework for pediatric rare diseases
Rare Disease Research Network (RDRN)
@the_rdrn
A new, inclusive, online hub facilitating patient-initiated #raredisease research. #NIHR funded, co-created by the rare disease community, #CamRARE & #PLRH.
Rareatives
@rareatives
Share Your Rare | Amplifying Rare Disease Voices 🎙️ 📖 Sharing stories from the 1 in 10 🧬 New patient-led publication #RareDisease #PatientVoicesMatter
Dr. Ashley Krull, Ph.D.
@ashleyakrull
Cell Therapy Laboratory Associate Director | Biomedical Researcher | ISCT Telegraft Editor | Amateur Curler
Verónica Torrano/ VTLab
@vtorranomoya
Team Leader and Ramón y Cajal Researcher. Dpt. Biochemistry and Molecular Biology UPV/EHU. Cancer researcher, music lover and feminist.
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]
NHS Genomic Medicine Service
@nhsgms
Information for and from the NHS Genomic Medicine Service 🧬 #Genomics. england.nhs.uk/publication/ac…
Chantal Babb de Villiers
@chantalresearch
Researcher with a special interest in cancer, genetics, epidemiology and public health. Views are my own. Retweets are not an endorsement. 🇿🇦🇳🇱
Fundación Fero
@fundacionfero
Fundación privada con el objetivo de contribuir al desarrollo de la investigación oncológica traslacional.
Piers Allen_MedComms
@piers_medcomms
Former CMPP: Certified Medical Publication Professional, ISMPP. Continuing FRSM: Fellow Membership of the Roy Soc Med. Views own ...