Share4Rare
@share4rare
💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
ID: 928582907949715456
https://www.share4rare.org 09-11-2017 11:19:52
2,2K Tweet
1,1K Followers
968 Following
FEDER | Enfermedades Raras
@feder_ong
👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 422 organizaciones de pacientes y a 1.546 patologías poco frecuentes
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.
Sean
@sean_ruddy
Natalia Ferreira
@natbcn
Joserra
@jramonfernandez
Papá de Emma, neonatólogo orcid.org/0000-0001 y personaje en el libro de la cómica @raquelsastrecom youtu.be/oHzQqajtwik?si…
Hospital Sant Joan de Déu Barcelona ES
@sjdbarcelona_es
Hospital materno infantil de alta especialización. Contacta en sjdhospitalbarcelona.org/es/contacta
TREAT-NMD®
@treat_nmd
Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
Mònica Puntí Brun
@monicapunti
Periodista i documentalista. Professora lectora de la UdG. Gironina d’orígen i terrassenca d’adopció.
Mitra Tavakoli
@mitratava
Academic @UniofExeter @ExeterMed, Clinical Researcher, Interest #Diabetes #Neurodegenerative #Ophthalmic markers #implementation #diagnosis, #Vision
Zdenek
@zdedolezal
Digital marketing & crypto enthusiast, occasional DJ & music event promoter, #DaftPunk & lasagna worshiper. Allergic to BS.
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.
ENMC
@_enmc
Esther Lieberman
@estherlieberman
JD
@davisj_r
Son, Brother, Husband and Dad of 2
Marie James 🏴
@pmtjames
Tuberous Sclerosis Ambassador @UKTSA;Patient Rep Wales Rare Disease Implementation Group @NHSW_RDIG;Trustee @WalesRare #TSC #Autism #Epilepsy @SOSHDdUHB
Share4Rare_es
@share4rare_es
💻🌍 Plataforma que promueve la #investigación colaborativa en #EnfermedadesRaras 🚀 | Coordinación @IRSJD_info | English: @share4rare
Mayte Piedra
@dianarosepp
BBMRI-ERIC
@bbmrieric
Supporting biobanking and biomolecular research. 🦋 bsky.app/profile/bbmrie… 🖇️ linkedin.com/company/bbmri-…
JWMDRC
@jwmdrc
John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University #dmd #sma #lgmd #fshd #dm1 #gne #col6 #cnm
Lab. Genetica Medica
@lab_genmed
World Muscle Society
@worldmusclesoc
The WMS is a global, multidisciplinary community committed to advancing the science of neuromuscular disorders. Join us in Vienna for #WMS2025.
Moira
@moira65410827
European Reference Network on Rare Bone Diseases
@ern_bond
Share. Care. Cure.
ERDERA
@erdera_org
The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
Árbol de Ideas
@arbolideas
En blanco
CDG CARE
@cdgcareorg
CDG CARE is a nonprofit organization founded by parents to support families affected by Congenital Disorders of Glycosylation.
Nadir | نادر
@nadircommunity
للنادرين، منصة للمعرفة والتواصل لتمكين مرضى الأمراض النادرة وعائلاتهم. For the rare, a platform for connection to empower patients and their families.
Institut de Recerca Sant Joan de Déu
@irsjd_info
Centre de recerca i innovació en biomedicina · Centre @iCERCA · Podeu contactar a irsjd.org/ca/contacte/
Dlopez
@dlopez74482233
London Neurology Clinic
@clinicneurology
London Neurology Clinic is a multidisciplinary private healthcare practice based in London, serving adult patients with complex neurological disorders.
Samuel Mackenzie MD PhD
@notoriousemg
Pediatric #neuromuscular doc, amateur scientist @URneuroscience, runner, chess enthusiast, dad. #Meliora
Manuel Mateos Fernandez
@manumateos86
Family, Friends and Duchenne
@ffd_usa
FamilyFriendsAndDuchenne.org
bevma
@bevmaina
Heavily catholic. Holy family adoptee ✝️ St Michael's friend. Sharing latin prayers hope they get to right people. Data science/statistics enthusiast. #bambi
Eczema RDC
@rdceczema4128
Nous sommes une organisation sans but lucratif des malades de le peau : ECZEMA RDC, asbl
Sarah Lewis
@sarahlewis10379
GenomicOS
@genomic_os
The Operating System for Human Evolution
Cure HSPB8
@curehspb8
The only patient advocacy group focused on HSPB8 Myopathy. On a mission to find treatments and cures, raise awareness and build a strong community.
ARSub
@dmcarsub
semper trado
DIGI4ECO
@digi4eco
Digital Twin-sustained 4D ecological monitoring of restoration in fishery depleted areas Horizon Europe Programme GA No101112883
Samiye Çakıral
@ralcak93838
Latin-SEQ
@latinseq
Proyecto de investigación #LatinSEQ: avanzando en el diagnóstico de enfermedades #neuromusculares en toda #LATAM desde el @JWMDRC en @UniofNewcastle🌈🏳️⚧️✊🏿
PICKED Project
@projectpicked
Advancing personalized medicine in chronic kidney disease through interdisciplinary research and innovation. #CKD #Healthcare #Research
Rareatives
@rareatives
Share Your Rare | Amplifying Rare Disease Voices 🎙️ 📖 Sharing stories from the 1 in 10 🧬 New patient-led publication #RareDisease #PatientVoicesMatter
Nazlıcan TOPRAKTEPE
@nzlcntprktp
🌜❤️🪺🇹🇷
Xue Zhang
@xuezhang610865
Fashion designer 👗 | Art lover 🎨 | Enjoys photography 📸 | Advocates for sustainability 🌍 | Making a difference daily!
Guilherme de Macedo Oliveira
@guilhermemacoli
✝️ ⚕️ 🩺 🧬 🇮🇹 🇧🇷 🇵🇹 🗽
Fatihin Fedaisi
@fa57516fedaisi
help.waleed
@helpwaleed
Support Waleed Fight Against Duchenne Help Waleed,a child battling a rare muscular disorderget the care he needs.Your support brings hope and transform his life
Kim
@kim331263050249
Keathue
@keathuehgnv
cyberbambiMB
@databambi
idk how that actually happened but here we are Holy family adoptee ✝️💝
Quiotho
@quiotho02xburx
Sarah Bragg
@sarah_brag21680
AnnemiekeAartsma-Rus
@oligogirl
Translating science from bench to bedside and from jargon to lay language
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]
Piere Rodriguez-Aliaga
@pierebiophysics
@Stanford Postdoc • @UCBerkeley PhD Biophysics • @hdfcures fellow • Protein misfolding linked to neuro diseases • Single-molecule tools• Space/Pisco enthusiast
Okil McDede
@denningattorney
I mean what Isay and I say exactly what I mean.
Tiszavirag
@tiszavirag2
Kortárs műemlék, benne 12 szoba és Spa, Magyarországon egyedülálló építészeti megoldásokkal.
Padiporn Vasinanukorn Limumpornpetch
@drpadiporn
Endocrinologist, and proud mom of two lovely boys
VASCERN
@vascern
Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
ern euro_nmd
@euro_nmd
Building bridges and breaking barriers in rare neuromuscular diseases.
ERN RARE LIVER
@ern_rare_liver
A major opportunity for better treatment for patients with rare liver disease in Europe
The ED Society
@edsocietyuk
Our vision is that every individual affected by Ectoderma Dysplasia is equipped with the knowledge needed to manage ED effectively and live life to the full.
World Duchenne Organization
@worldduchenne
Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
Cure MSD
@curemsd
Our mission is to cure Multiple Sulfatase Deficiency #TogetherWeCan #CureMSD
EpiCARE
@epicare_ern
European Reference Network for Rare and Complex Epilepsies. We are 50 specialist hospitals in 24 European countries with expertise in epilepsy & research.
Solve-RD
@solve_rd
Solve-RD is a H2020 funded flagship EU project. We will solve large numbers of rare diseases, for which a molecular cause is not known yet.
kirubakaranpalaniyappan
@kirubakaranpal1
@ERN_RND 🧠
@ern_rnd
European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients. Free webinars: bit.ly/33mMY4C