Therapeutic Advances in Rare Disease @TARareDisease
A SAGE gold open access journal | Publishing high-quality articles in the field of rare disease | Launched in 2020 | Editor @Urvalind | #TARareDisease journals.sagepub.com/home/trd London Joined January 2020-
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Each year, around 6,000 children are born in the UK with a genetic condition that will likely remain undiagnosed. Today on Undiagnosed Children's Day, we're highlighting @SWAN_UK, a support community for families affected by a syndrome without a name. ow.ly/wgKu50RfYMa
It's finally arrived: April 17th! Today marks #WorldHemophiliaDay—a day dedicated to celebrating our global community. From all of us at the WFH, we wish you a joyous #WHD2024! 🎉
Mental health matters! 🧠 At #ECRD2024, we will be co-creating a new toolkit for the rare disease community by exploring best practices and tools that can be drawn on and scaled to form the basis of the new Toolkit. Less than one month to go! Join us 👉 go.eurordis.org/hVPVPA
Sharing more research from Therapeutic Advances in Rare Disease on #WorldHemophiliaDay! 🩸 Etranacogene dezaparvovec for hemophilia B gene therapy bit.ly/445jo4h @CourtneyUCSD @SageClinMed #hemophiliaB #hemophilia #RareDisease #FOAMed #TARareDisease #OpenAccess
Today is #WorldHemophiliaDay! 🩸 So we wanted to share some of the research we have published in this area! Improving patient informed consent for #haemophilia #genetherapy: the case for change bit.ly/49FONvh @TheWoollard @SustainableRich @DRosenfelt @SageClinMed
📣 New online! A United States-based patient-reported adult polyglucosan body disease registry: initial results 🔗 bit.ly/3TYfk1i 🔓 Open Access @SageJournals #OpenAccess #FOAMed #PolyglucosanBodyDisease #RareDisease
The visible challenges facing those living with rare diseases are the tip of the iceberg. Let’s not settle for skimming the surface. It's time to #ActRare2024, dive deep, and emerge with solutions for a brighter future. 🏊 Dive into our policy demands: eurordis.org/actrare2024/
Why is Gene People involved in #RareDiseaseDay ? Over 70% of all rare diseases are genetic. We want to raise awareness of these and all rare diseases this special day.
🚨 IT’S RARE DISEASE DAY! 🚨 For #RareDiseaseDay 2024 we're highlighting key facts and figures to educate change makers on the shared challenges of our community. Alongside these we will share the #StoriesBehindTheStats. 👉 ow.ly/4j7E50QIXEY
Here at @TARareDisease we are committed to making our research as accessible as possible for the rare disease community. See the message below from our Editor in Chief @Urvalind All our articles are published open access, so free to read all year not just on #RareDiseaseDay!
The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease. Rare is Strong! Proud! Many! #RareDiseaseDay2024
Today we raise awareness and ignite change for the 300 million individuals worldwide living with a #raredisease. One of these diseases is r(20), which falls into the 5% or >6,000 ultra-rare conditions. Pls share this post… Let's spread awareness together. 💜 #rarediseaseDay🧬
📣 Call for Papers Launching today, a new collection of articles which seeks to bring together experts in the field of rare infectious diseases 🔓#OpenAccess 🤝 Collaboration with @TAInfDis 📅 Deadline 30 Sept 🔗 bit.ly/3V55wV4 @SageClinMed @Urvalind #RareDiseaseDay
Our favourite day of the year is here - Rare Disease Day! Join us and the rare disease community around the world to spread knowledge about rare diseases All our articles are free to read & have a plain language summary to make them more accessible to patients #RareDiseaseDay
Today is Rare Disease Day, we'll be sharing content and resources to help spread knowledge and support, so keep an eye on our socials! To find out more, and to access a list of helpful resources, visit: ow.ly/Og3Y50QIH9x #RareDiseaseDay @Unique_charity @GeneticAll_UK
Today is Rare Disease Day! The EURACAN network is dedicated to treat rare adult solid cancers and stands in solidarity with the rare disease community. @eurordis @rarediseaseday #rarediseaseday #raredisease #rareadultsolidcancer #rarecancer
🌏Today is Rare Disease Awareness Day! 🤲Let's come together in solidarity, fostering awareness and celebrating the incredible resilience of those navigating unique challenges. #RareDiseaseDay #LightUpForRare
🚨 IT'S RARE DISEASE DAY GLOBALLY! 🚨 Join us marking #RareDiseaseDay 2024! Spread awareness, share stories, and support those living with rare diseases. Together, we make a lasting impact! #ShareYourColours
The pharmacological treatment of granulomatosis with polyangiitis: a review of clinical trials registered in clinicaltrials.gov & the International Clinical Trials Registry Platform 🔓 bit.ly/3H6My8B @SageJournals #GranulomatosisWithPolyangiitis #RareDisease
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Women in Vision UK @womeninvisionuk
2K Followers 361 Following We aim to promote connections between women working in all fields of #Vision and #EyeResearch. Follow us for exciting updates👁 https://t.co/wenwnOE8d8
UK Eye Genetics Group @UKEyeGenetics
809 Followers 119 Following UK Eye Genetics Group represents all gene-based topics in the eye #Genetics #Genomics #Education #Research #InheritedEyeDisease #GeneTherapy #GeneticCounselling
Prof Mariya Moosajee @MariyaMoosajee
4K Followers 353 Following Professor of Molecular Ophthalmology @UCLeye & @TheCrick, Consultant Ophthalmologist in Genetic Eye Disease, Genetics Lead @Moorfields, Mum 💙Art & Equality
AnnemiekeAartsma-Rus @oligogirl
3K Followers 486 Following Translating science from bench to bedside and from jargon to lay language
Alex Garanto @Jandritu
639 Followers 791 Following Group leader developing novel molecular therapies for neurometabolic and inherited retinal diseases at Radboudumc 👁🧬.📍Based in Nijmegen
Louise Fish @LouiseFish1
806 Followers 2K Following Chief Executive at Genetic Alliance UK. Passionate about improving health and social care.
Rare Patient Voice @rarepatientvoic
2K Followers 4K Following We help clients find rare and non-rare disease patients and caregivers for studies, and connect patients and caregivers with paid research opportunities.
UCL Institute of Opht.. @UCLeye
6K Followers 590 Following Leading the way in eye health research from bench to bedside since 1948. Partners with @UCLMoorfieldsEd to deliver world-class ophthalmic education.
Virginia Arechavala @VArechavala
2K Followers 2K Following Scientist and mum. @ikerbasque Professor @biocrucesHR Interested in #RNAtherapy for #neuromuscular disorders. De Bilbao de toda la vida and adopted Londoner.
EUCOPE @EUCOPE
2K Followers 2K Following Giving a bigger voice to small and mid-sized innovative #pharma #biotech #medtech companies in Europe 🎧Sounds of Science Podcast: https://t.co/WC85LXFD1y
Dr Suja Somanadhan @sujas15
3K Followers 4K Following Associate Professor I Researcher| #FulbrightScholar |Children's Nurse I PhD I #RareDiseases #Child-health #RAIN #RAINDROP #COViSION #SAMPI Views are my own
Roselyn Lockamy @RoselyLockam
81 Followers 5K Following
CACNA1A Foundation @cacna1a
2K Followers 2K Following Nonprofit dedicated to a brighter future for those with CACNA1A variants. On a mission to fund life changing research while supporting families along the way.
Canadian Association .. @PorphyriaCanada
97 Followers 608 Following Providing information and support to Canadians with porphyria and their families since 2014.
Peer Med Zebra | Rare.. @peermedzebra
71 Followers 295 Following An initiative of @PeerMedicalFDN advocating for intersectionality in care for patients with Rare Diseases so that no one is left behind!
ZoiAn @ZoiAn2
380 Followers 583 Following A curious person; a vasculitis expert patient; a vasculitis awareness voice. Love and respect is my religion. Expressing personal views. #vasculitis
Cancer Control @CancerControl_
1K Followers 5K Following Follow us for the latest research developments in the cancer control field (IF 2.6). Published in association with @MoffittResearch.
DrJuanCelis @GIPEIT
16K Followers 4K Following Médico Infectólogo/Tropicalista; Medicina del Viajero en la Amazonía Peruana. Infectious & Tropical Disease Physician.
cgn8s90mu7qczsl0 @cfvl2g58qd3ue
3 Followers 320 Following If you want to make friends, you can contact me anytime TG：https://t.co/d04lHzNG6Y
Leslie Moore @LeslieMoor58250
86 Followers 3K Following
Cristiana Sieiro Sant.. @cristianasieiro
1K Followers 766 Following Rheumatologist and Clinical Researcher @ReumaLeon | @JovReum | @EMEUNET | YIG at @EUSTAR_org |@RheumJnl | #lupus #scleroderma #epidemiology | 🇵🇹 and 🇪🇸
Congenital Hyperinsul.. @CHIA_India
14 Followers 119 Following
Laboratorios Larrasa @LacombeAng976
1 Followers 11 Following
Denee’ Chmiel @zebraadvocate
18 Followers 36 Following Rare disease advocate, CVID life, WAIHA warrior, Psa
_Victoria9_ @Victoria9173429
29 Followers 2K Following
Laboratório de Erros.. @inbornerrors
66 Followers 291 Following Laboratory dedicated to the research on inborn errors of metabolism at Universidade Federal do Rio de Janeiro. 👨🔬Gustavo Ferreira 👩🔬 Patricia F. Schuck
cillianboushel @cillianbou36694
260 Followers 1K Following
Flor Haislett @FlorHaislet
49 Followers 5K Following
orphanwriter @orphanwriter
1K Followers 1K Following Senior Advisor, National Organization for Rare Disorders. Honored to work with amazing #raredisease patients, caregivers, researchers & clinicians.
White Swan @WhiteSwan4Good
146 Followers 377 Following White Swan is a registered charity in England and Wales (1176486) aiming to improve health and well being through technology and analytics.
champs @kejr35778464
228 Followers 2K Following champs ist eine Aktion um Pädiater auf die seltene Erkrankung "Mukopolysaccharidose" (MPS) aufmerksam zu machen.
Hamlin @lesagothe48608
15 Followers 2K Following Be brave enough to choose the life you want to live and stick to it. This is a great life.
Therapeutic Advances .. @TARepHealth
37 Followers 226 Following Reproductive Health | Impact Factor 3.4 | Indexed in: ESCI, PMC, DOAJ | Published by @SAGEJournals | #OpenAccess
TA in Pulmonary & Cri.. @TAPulmCritCare
21 Followers 194 Following Pulomary & Critical Care Medicine | Impact Factor 2.0 | Indexed in: ESCI, PMC, Scopus, DOAJ, ProQuest | Published by @SAGEJournals | #OpenAccess
Alice @cron_alice92
222 Followers 3K Following
Barby Ingle Official @BarbyIngle
20K Followers 9K Following #AZ State Rep Candidate #LD7 |#PCRC D5, | #IAm #Writer #RareDisease #ChronicPain, #UniversalPetite, Creator of #NERVEmber
Anne Melchior @MinnesotaRed
122 Followers 496 Following
United Mitochondrial .. @UMDF
3K Followers 90 Following UMDF powers the research, education, & support that is advancing treatments for patients and families affected by mitochondrial disorders.
RARE Ireland @rareireland
1K Followers 3K Following We are a parent led charity organisation founded since 2017 providing support for families of children with rare conditions in Ireland-RCN 20206340 #rareireland
Padashi @Padashi478983
36 Followers 2K Following
Alpha-1 UK @Alpha1UK
539 Followers 347 Following Alpha-1 UK is a patient group charity formed by those diagnosed with the genetic condition Alpha 1 Antitrypsin Deficiency.
Twgenes. Sd Lamb-Shaf.. @TwgenesS
43 Followers 776 Following Lamb-Shaffer Sd. Mutación gen SOX5, Cr 12p12. Ya somos 25 en España, por ahora. Diversidad en habilidades funcionales. En resumen maravillosos. 😍😍❤️❤️
Pradeep Nair @DrDeepNair
0 Followers 202 Following
Carolyne Kiambo Jotha.. @shirokiambo
2K Followers 3K Following #Digitalfirst Health journo at @BBCAfrica , MA Digital communications at @ExperienceUSIU #Classof2018 and #AJEA2023 Winner #JesusisKing Got a story?📩
Patricia @garcia97patrici
198 Followers 3K Following
rareparenting @rareparenting
262 Followers 762 Following Online magazine for parents of children with #disabilities, #rarediseases and #specialneeds
Russell Wheeler @LHONrussell
228 Followers 285 Following Passionate patient advocate working to help bring hope for people with Leber's Hereditary Optic Neuropathy (LHON) and other genetic and rare diseases.
Melaine @stevenson27mela
174 Followers 3K Following
Plasmatology @BdxPlasmatology
7 Followers 27 Following A @SAGE_Publishing gold open access journal | Publishing high-quality articles in the fields of human blood plasma
jaturong teerakanok @jateera
7 Followers 208 Following
Rick Knight @PstRickKnight
183 Followers 341 Following A 40+ yr journey as a teacher, missionary has left me with a perfect family, and with friendships all over the world. Now I manage my MG, & find joy on the way!
Suzanne Gadilhe @SJGadwork
0 Followers 16 Following
Ry Leahy @RySciComms
706 Followers 3K Following Science Communications for Advanced Therapies - Cell & Gene Therapy - Vice President of Research @phacilitate / #cellltherapy #genetherapy #firstgenacademic
World Duchenne Awaren.. @DuchenneDay
2K Followers 885 Following Join us on September 7 on World Duchenne Awareness Day #WDAD2024. Help raise awareness for people living with dystrophinopathies!
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Women in Vision UK @womeninvisionuk
2K Followers 361 Following We aim to promote connections between women working in all fields of #Vision and #EyeResearch. Follow us for exciting updates👁 https://t.co/wenwnOE8d8
UK Eye Genetics Group @UKEyeGenetics
809 Followers 119 Following UK Eye Genetics Group represents all gene-based topics in the eye #Genetics #Genomics #Education #Research #InheritedEyeDisease #GeneTherapy #GeneticCounselling
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Prof Mariya Moosajee @MariyaMoosajee
4K Followers 353 Following Professor of Molecular Ophthalmology @UCLeye & @TheCrick, Consultant Ophthalmologist in Genetic Eye Disease, Genetics Lead @Moorfields, Mum 💙Art & Equality
David R. Liu @davidrliu
64K Followers 59 Following Professor at Harvard, Broad Institute, & HHMI. Our lab integrates chemistry & evolution to illuminate biology & enable new therapeutics. IG/Threads: @davidrliu1
EUPATI @eupatients
8K Followers 2K Following The European Patients' Academy on Therapeutic Innovation is an independent, non-profit organisation committed to patient engagement through patient education.
AnnemiekeAartsma-Rus @oligogirl
3K Followers 486 Following Translating science from bench to bedside and from jargon to lay language
Orphanet @Orphanet
6K Followers 625 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
Evelyn Mensah - Frien.. @eveosh
5K Followers 1K Following NHS Consultant Eye Surgeon | WRES Expert | Angelic Troublemaker | Resists systemic racism | Made in Ghana 🇬🇭 | Psalm 27 35 91 | My views | RT ≠ endorsement
Luke Rosen @lukebrosen
2K Followers 432 Following Dad of 2 amazing kids. Founder of https://t.co/M8dxuYqmgL. Works with families affected by rare neurological diseases and cancer. Baseball and hockey. Firefighter.
Matthew S. Alexander @Matt_Muscle_Guy
5K Followers 4K Following Geneticist, Skeletal Muscle, Drug development, Gene therapies. Non-coding RNA, and Zebrafish Aficionado. All tweets are my own. Instagram @thealexanderlab
Michael Makris @ProfMakris
14K Followers 1K Following Emeritus Professor of Haemostasis and Thrombosis in Sheffield, UK. I tweet about thrombosis, hemophilia, COVID-19, medicine, NHS & AI. Opinions are my own.
WFH @wfhemophilia
7K Followers 163 Following The World Federation of Hemophilia improves and sustains care for people with inherited bleeding disorders around the world.
JWMDRC @jwmdrc
1K Followers 501 Following John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University #dmd #sma #lgmd #fshd #dm1 #gne #col6 #cnm
Alex Garanto @Jandritu
639 Followers 791 Following Group leader developing novel molecular therapies for neurometabolic and inherited retinal diseases at Radboudumc 👁🧬.📍Based in Nijmegen
Denee’ Chmiel @zebraadvocate
18 Followers 36 Following Rare disease advocate, CVID life, WAIHA warrior, Psa
Plasmatology @BdxPlasmatology
7 Followers 27 Following A @SAGE_Publishing gold open access journal | Publishing high-quality articles in the fields of human blood plasma
Therapeutic Advances .. @TARepHealth
37 Followers 226 Following Reproductive Health | Impact Factor 3.4 | Indexed in: ESCI, PMC, DOAJ | Published by @SAGEJournals | #OpenAccess
MRC MBU @MRC_MBU
3K Followers 275 Following Research at the MRC Mitochondrial Biology Unit is focussed on the involvement of mitochondria and their dysfunction in an ever-increasing range of human disease
United Mitochondrial .. @UMDF
3K Followers 90 Following UMDF powers the research, education, & support that is advancing treatments for patients and families affected by mitochondrial disorders.
Marlen Lauffer @LaufferMarlen
196 Followers 245 Following Lover of rare diseases, especially neurological disorders. Working on developing individualized ASO treatments at #DCRT, together with #1M1M, and #N1C.
Charles Sturt Univers.. @CharlesSturtUni
15K Followers 354 Following Australia's largest regional university. Use #CharlesSturtUni to join the conversation. TEQSA PRV12018 (Australian University) CRICOS 00005F
Journal of Multimorbi.. @JMultimorbidity
830 Followers 442 Following Journal of Multimorbidity and Comorbidity is an open-access journal for the management of patients with #comorbidity / #multimorbidity, Published by SAGE.
Dr Irwin Lim @_connectedcare
5K Followers 343 Following Co-founder of BJC Health, Sydney’s only one-stop centre for Rheumatic Disease. check out https://t.co/uk5ACloBSx
Annette McKinnon @anetto
11K Followers 11K Following Patients need access to information. Advocate for patient inclusion in health care, research, governance. PAN co-founder, RA,Sjogrens. MedX ePatient Scholar
Lou Kawka @LouKawka
112 Followers 52 Following 👩⚕️ Medical resident 📍 in Strasbourg #FutureRheumatologist
Cristiana Sieiro Sant.. @cristianasieiro
1K Followers 766 Following Rheumatologist and Clinical Researcher @ReumaLeon | @JovReum | @EMEUNET | YIG at @EUSTAR_org |@RheumJnl | #lupus #scleroderma #epidemiology | 🇵🇹 and 🇪🇸
sara cannizzo @saracannizzo
57 Followers 251 Following
Andrea Gaglioti @GagliotiAndrea
50 Followers 71 Following Project and financial manager of the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases ERN ReCONNET
Diana Marinello @DianaMarinello
206 Followers 517 Following
Silvia Aguilera @sil_aps
354 Followers 763 Following 🇪🇺 APS ePAG in @ern_reconnet🩸Spanish APS Association vice president (@afosfolipido) 👩🏻🔬PhD in Materials Science
FahrBeyond @FahrBeyond
179 Followers 450 Following Official account for Fahr Beyond. We are a charity that supports people with #FahrsDisease & #Fahrs like conditions, to educate & research. #Parkinsons #PFBC
Amanda Nolan @manderous
139 Followers 103 Following
The Netherlands Cance.. @NKI_nl
5K Followers 1K Following The Netherlands Cancer Institute (NKI): at the international forefront of cancer research and treatment for over 100 years. Our Dutch account is @hetAVL.
Ben Westphalen @BenWestphalen
4K Followers 200 Following Oncologist focused on #PrecisionOncology 🎯 & #PancreaticCancer 💜 •@myesmo PMWG chair • #MissionCancer Board🇪🇺•Rolling with @OncoAlert 🚨 •Views are my own•
ESMO - Eur. Oncology @myESMO
75K Followers 874 Following The European Society for Medical Oncology (ESMO) is a reference organisation for cancer education and information, supporting the oncology community’s work.
Jon Trent, MD, PhD @JTrentMDPhD
6K Followers 4K Following Associate Director @SylvesterCancer. Director #Sarcoma and #GIST. Telemedicine and in-person clinics are open. Tweets are my own.
Leah Heidenreich, MD @LeahHeidenreich
14 Followers 2 Following Pediatrician in Rochester, Minnesota Current Chief Resident at Mayo Clinic Future Neonatologist
Tanjala T. Gipson, M... @DoctorGipson
215 Followers 194 Following Board-certified, residency-trained Neurologist with Special Qualifications in Child Neurology and Neurodevelopmental Disabilities Specialist; Author and Speaker
Rare Tumors @Sage_Raretumors
18 Followers 106 Following An open-access, peer-reviewed international medical journal devoted entirely to the study, diagnosis, and treatment of #rarecancers | EiC: Prof Dian Wang
JSRD @JScleroderma
636 Followers 581 Following The Journal of Scleroderma and Related Disorders (JSRD), the official independent journal of the World Scleroderma Foundation & EUSTAR published by Wichtig
SETBP1 Society @setbp1
325 Followers 165 Following President of SETBP1 Society and Parent Advocate for SETBP1-HD
Penn Medicine @PennMedicine
35K Followers 2K Following We are dedicated to the highest standards of patient care, education and research. Please allow up to 24 hours to reply to @ messages. https://t.co/ywUzQ9yGf3
Amicus Therapeutics @amicusrx1
2K Followers 532 Following We are a global biotech company focused on discovering, developing & delivering high-quality medicines for people living with rare diseases.
The E.WE Foundation @EveryoneIsWe
262 Followers 224 Following Healthcare advocacy organization for families affected by #EdwardsSyndrome or #Trisomy18, other #rarediseases, and #specialhealthneeds.
Sarita Edwards @SaritaEdwards
1K Followers 812 Following Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
RARE-X @RARE_X_
1K Followers 208 Following PATIENTS' DATA POWERING PROGRESS - RARE-X is expected to become the largest data-sharing initiative focused on rare diseases. More to come.............
BCMHouston @bcmhouston
29K Followers 2K Following Baylor College of Medicine is a health sciences university that creates & applies science and discoveries to further education, healthcare & community service.
Epilepsy Foundation o.. @EpilepsyFdn
39K Followers 2K Following #EpilepsyAwareness & Education | FREE #SeizureFirstAid Certification | 24/7 Helpline (1-800-332-1000) | Unwavering ally for people w/ #epilepsy & #seizures.
brandy fureman @BFureman
155 Followers 125 Following Change the outcome. @EpilepsyFdn Chief Outcomes Officer. Former NINDS. PennState Neuroscience. CedarCrest Genetic Eng. #EpilepsyLHS #EpilepsyEquity
The Gilbertson Lab @Gilbertson_Lab
1K Followers 216 Following Lab of Prof. Richard Gilbertson! Our lab works on the Cellular and molecular origins of cancer particularly pediatric brain tumors and stem cell potency.
Jess @jesell_
131 Followers 234 Following CRUK postdoc, Lucy Cavendish College PDRA & Ask for Evidence Ambassador
Sigourney Bonner @siggs28
2K Followers 738 Following Neuro-oncology scientist. PhD student at @cambridge_uni at @cruk_ci in @gilbertson_lab. @forbesunder30. @ACRC_UK. Follower of God.❤️ CEO: @BlackinCancer.
Emma Sutcliffe @SuttyEmma
2K Followers 2K Following Medical Writer. Patient Engagement Expert. Lecturer & Advocate for health literacy and health equity from 25y patient voice in R&D. Views own.
Prof. Denis Poddubnyy @DrPoddubnyy
527 Followers 71 Following Head of rheumatology, Department of gastroenterology, infectious diseases and rheumatology, Charité - Unviersitätsmedizin Berlin
Elena MyasoedovaMD �.. @MyasoedovaElena
824 Followers 985 Following #Rheumatology Assoc Prof Med&Epi @MayoClinic; #RA #PrecisionMedicine, #aging @NIH funded. @Fulbright scholar 2008-10, #mentoring; mom 👧👦🐶
Elena Nikiphorou @ElenaNikiUK
4K Followers 2K Following Rheumatologist/Researcher, KCL. Main interest: Inflammatory arthritis. President of Rheumatology Section, Royal Society of Medicine. Past Chair @EMEUNET.
Biomarker Insights @BiomarkerInsigh
13 Followers 51 Following An official gold #OpenAccess peer-reviewed journal that supports the field of biomarker insights. A @SAGE_Publishing title.
Amanda Haddock 🧬 @AmandaHaddock
8K Followers 6K Following White House Champion of Change for Precision Medicine 🧬, Pres of @BeADragonMaster 🐲 Mom to 4: 3 on Earth, 1 in Heaven because of brain cancer.
Tufts University @TuftsUniversity
53K Followers 1K Following Tufts is a student-centered research university committed to helping students and faculty generate bold ideas. Retweets do not imply endorsements.
MDS Foundation @MDSFoundation
3K Followers 2K Following The MDS Foundation is building critical awareness of Myelodysplastic Syndromes (MDS), a rare, often undetected blood cancer. 🔬🩸
The Laughlin Family F.. @FightRareCancer
565 Followers 146 Following The Laughlin Family Foundation is a nonprofit 501(c)3 with a mission to help raise awareness and funding for rare cancers. Every Cancer Deserves A Voice
Gerald Schwank @schwanklab
949 Followers 160 Following Associate Professor @UZH_en. We develop genome editing approaches for personalised treatment of rare diseases and cancer.Each year, around 6,000 children are born in the UK with a genetic condition that will likely remain undiagnosed. Today on Undiagnosed Children's Day, we're highlighting @SWAN_UK, a support community for families affected by a syndrome without a name. ow.ly/wgKu50RfYMa
Today is #WorldHaemophiliaDay and we want to celebrate all of our members, supporters and volunteers. Without you, we can't do what we do. If you're fundraising today, please tag us in any pictures - we'd love to share your incredible efforts. #WorldHemophiliaDay #WHD2024
It's finally arrived: April 17th! Today marks #WorldHemophiliaDay—a day dedicated to celebrating our global community. From all of us at the WFH, we wish you a joyous #WHD2024! 🎉
Mental health matters! 🧠 At #ECRD2024, we will be co-creating a new toolkit for the rare disease community by exploring best practices and tools that can be drawn on and scaled to form the basis of the new Toolkit. Less than one month to go! Join us 👉 go.eurordis.org/hVPVPA
The visible challenges facing those living with rare diseases are the tip of the iceberg. Let’s not settle for skimming the surface. It's time to #ActRare2024, dive deep, and emerge with solutions for a brighter future. 🏊 Dive into our policy demands: eurordis.org/actrare2024/
Why is Gene People involved in #RareDiseaseDay ? Over 70% of all rare diseases are genetic. We want to raise awareness of these and all rare diseases this special day.
🚨 IT’S RARE DISEASE DAY! 🚨 For #RareDiseaseDay 2024 we're highlighting key facts and figures to educate change makers on the shared challenges of our community. Alongside these we will share the #StoriesBehindTheStats. 👉 ow.ly/4j7E50QIXEY
Launching today, on #RareDiseaseDay, we are excited to announce a new special collection which seeks to bring together experts in the field of rare infectious disease 🤝 Collaboration with @TARareDisease 📅 Deadline 30 Sept Full info: bit.ly/3SXLQA7 @andhen25 @Urvalind
The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease. Rare is Strong! Proud! Many! #RareDiseaseDay2024
Today we raise awareness and ignite change for the 300 million individuals worldwide living with a #raredisease. One of these diseases is r(20), which falls into the 5% or >6,000 ultra-rare conditions. Pls share this post… Let's spread awareness together. 💜 #rarediseaseDay🧬
Today is Rare Disease Day, we'll be sharing content and resources to help spread knowledge and support, so keep an eye on our socials! To find out more, and to access a list of helpful resources, visit: ow.ly/Og3Y50QIH9x #RareDiseaseDay @Unique_charity @GeneticAll_UK
Today is Rare Disease Day! The EURACAN network is dedicated to treat rare adult solid cancers and stands in solidarity with the rare disease community. @eurordis @rarediseaseday #rarediseaseday #raredisease #rareadultsolidcancer #rarecancer
🌏Today is Rare Disease Awareness Day! 🤲Let's come together in solidarity, fostering awareness and celebrating the incredible resilience of those navigating unique challenges. #RareDiseaseDay #LightUpForRare
🚨 IT'S RARE DISEASE DAY GLOBALLY! 🚨 Join us marking #RareDiseaseDay 2024! Spread awareness, share stories, and support those living with rare diseases. Together, we make a lasting impact! #ShareYourColours
special #UTI collection in collaboration with @TA_Urology. Submit your papers before March 15, 2024, for a chance to be featured. Let's advance UTI research together! 🩺🧬 #UTIAdvancements #CallForPapers Details: bit.ly/44TBNR2
🚨 New podcast alert! 👀 Introducing… Rare on Air: Stories! 🎉 In the lead up to @rarediseaseday, our new #EurordisRareOnAir mini-series will be featuring the stories from people living with a rare disease right across the globe! #RareDiseaseDay 👂 go.eurordis.org/0AhtQC
Today we received the news of de approval by the EC of AGAMREE (vamorolone) 📣santhera.com/assets/files/p…
#HappyNewYear everyone! Wishing you the very best for 2024. Peace, love and happiness to all ❤️
Interested in reviewing for an academic journal? Take a look at this short video to help get you started: ow.ly/Jg7950QlCOu #PeerReview #AcademicTwitter
#ACR23 @acr23 The WSF & @EUSTAR_org booth at the conference is now open! Come visit us to discover the latest updates
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