MetabERN
@metab_ern
The European Reference Network for Hereditary Metabolic Diseases. A better future for Rare Inherited Metabolic Disease patients. RT ≠ Endorsement. #Together
ID: 927564197545873408
http://metab.ern-net.eu 06-11-2017 15:51:52
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1,1K Followers
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Carolyn Wang
@cbwang
SVP Global Corp Comm at Ultragenyx, @JohnRitterFdn board member - also mother, beekeeper. I love science, curiosity and agents of change.
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
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.
James Nurse
@drjnurse
Father. Consultant paediatrician. Hockey player. Interested in IMD and Medical Education. Social Media editor at @JIMD_Editors
Joel A. E.
@_joelarenas
Medical genetics 🧬
Borja Merino
@destejiendo
Médico. Gústame a ciencia e a comunicación científica, a fotografía, a ornitoloxía, os libros, as viaxes, a cociña e algunha cousa máis (citation needed).
HEVAS
@hevas_nl
Support and advice for patients with hemangiomas, vascular anomalies and over/undergrowth syndromes #ISSVA #Vascern #Hecovan
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.
Ricardo Fernandes
@dondonric
Pediatrics & Resp, Pharmacology & Epi, clinical research. Skeptical optimistic, nostalgic, and often (nothing but) a dreamer. instagram.com/dondonric
Yesim Oztas
@yesimo55
Biochemist
Suzan Genova
@suzanmgenova
Board Member & Head of Communications, National Alliance Rare Diseases Bulgaria | ePAG, ERN-ITHACA & MetabERN | Chairperson, Nataliya Foundation & FAST Bulgaria
22Q11 Ireland
@22q11_ireland
Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
Kasia Pirog
@kasiapirog1
Geneticist, cartilage biologist, mountaineer. Senior Lecturer at Newcastle University. All views my own.
Bored busyman
@reallyboringdoc
A bored soul in a busy person
Dr Jennifer Adams
@jenniferadamsmd
Family Physician, Oxalosis & Hyperoxaluria Foundation Canadian Ambassador
kalpana panneerselva
@kalpana_ps
Dra A. García-Cazorla
@agarciacazorla
Child Neurologist and Researcher Neurometabolism-Synaptic Metabolism Lab. Director of Research in #Neuropediatrics @SJDbarcelona_es Prof at UB. Tweets my own
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.
flyingsummerain
@flyingsummerain
connection
Diego Saldaña Peñaloza
@diegosaldaa1
Médico genetista
Ivana Weichinger M.D.
@ivy_md_croatia
Cardiologist- cardiac EP and arrhytmology,cardiovascular genetics and genomics, intensive care, #AWAREStudy,death and consciousness,RED/NDE,singularity
Alvaro Hermida
@info_rares
Specialist on Metabolic Diseases and always looking on the bright side of life.
Marta Alonso Peña, PhD
@dramartaalonsop
Biotech, Cell biology & Liver lover @unican @IDIVALdecilla. YI Task Force @EASLedu.
NTC
@ntcresearchers
We are New Technologies - Research Center (NTC) - institute @ZapadoceskaUni focusing on #quantummaterials #greentech, #ecologicalenergysources, #humanwellbeing
AECOM&Sociedad
@aecomysociedad
Grupo de trabajo 📚 de la Asociación Española para el Estudio de los Errores Congénitos del Metabolismo aecom.com.es 🧬🩺#ErroresInnatosdelMetabolismo
EHDN News
@ehdn_news
European Huntington's Disease Network newsletter. Editor: Catherine Deeprose, PhD. We are also on BlueSky @ehdn-news.bsky.social and LinkedIn.
London Neurology Clinic
@clinicneurology
London Neurology Clinic is a multidisciplinary private healthcare practice based in London, serving adult patients with complex neurological disorders.
AEPOD Asoc. Española de POTS y otras Disautonomías
@aepod_es
Asociación Española de PoTS y otras Disautonomías Divulgación, apoyo e investigación para mejor atención sanitaria y calidad de vida
Bernat Bertran
@bertranbernat
Neurologist. Neuromuscular Unit at @hospitaldelmar🧠 Sports enthusiast🏔️
ACIMET | Asociación Acidemia Metilmalónica
@acimet_mma
Asociación de afectados y familiares con acidemia metilmalonica. #Enfermedadrara #metabólica #genética 🧬. 1/60.000 nacidos 👶 48 casos. 🗺️worldmmap.com
Martin Perčič
@percic_martin
Sara_Jonas_MD
@sarajonasmd
Internal Medicine Resident. Interested in #rarediseases,#palliativecare and #lipidology. Likes🎨& 📖 Writes 🇬🇧🇲🇫🇪🇸CAT
Silvia Kalantari
@kalantarisilvia
Clinical Geneticist 🧬 ESHG-Y board member
Vasudha Mishra | MBBS
@mish_amygdala
BabyDoc | Aspiring Physician-Scientist | she/her | #MedTwitter #MedX #HealthComm #SciComm #HealthTech #GraphicMedicine #FOAMed #NarrativeMedicine #artthatheals
Iancu
@ianbucur
ASFEGA
@asfega_
Asociación de enfermedades metabólicas hereditarias de Galicia
JNAMA
@mrdnamd
Christy
@susanba53774289
Jesus Follower, Mom of 4, Yaya of 2, Patio Gardener, Coffee Drinker, Caretaker of my Adult Children with UCD (Citrullinemia 1)-Warriors, Southern Aged Lady
Eczema RDC
@rdceczema4128
Nous sommes une organisation sans but lucratif des malades de le peau : ECZEMA RDC, asbl
Shubhnita Singh
@drshubhnita
Clinical Biochemical Genetics Fellow at @childrensPhila and @CHOP_Research
Visvalingam Arunath
@arunath
GenomicOS
@genomic_os
The Operating System for Human Evolution
Anvil Panow
@anvilpanow
Self-employed artist producing online publications. Snapchat snapchat.com/t/cnyRUm4X Zangi services.zangi.com/dl/conversatio…
Rachid smaili
@rsmaili30577
César Amaro
@cesaramaror
PICKED Project
@projectpicked
Advancing personalized medicine in chronic kidney disease through interdisciplinary research and innovation. #CKD #Healthcare #Research
Charles Marques Lourenço
@charleslourenco
Clinical Geneticist Neurogenetics and Hereditary Metabolic Disorders Specialist
Nazlıcan TOPRAKTEPE
@nzlcntprktp
🌜❤️🪺🇹🇷
Associazione Sindrome di Alport A.S.AL
@di_alport
Associazione di volontariato che lavora per sostenere le persone affette dalla Sindrome di Alport, le loro famiglie e la ricerca scientifica a favore della S.A.
ahmed elmostaph
@e64676ahmed
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
The Journal of Inherited Metabolic Disease
@jimd_editors
At a recent Council meeting a decision was made that the SSIEM will no longer interact with X. Please find us on any other Social Media channel.
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]
Eugène SINDIKUBWABO, MD
@mdsindikubwabo
Plastic and Reconstructive Surgery, University of Rwanda( Mmed candidate), SHARE Global Fellow, FCS( ECSA) candidate.
Katia
@katia_kims
Ana Darsadze
@anadarso
Pediatric Resident, MD
Kwari Hipofisis
@khipofisis
?????
ern euro_nmd
@euro_nmd
Building bridges and breaking barriers in rare neuromuscular diseases.
_ERNRITA
@_ernrita
ERN for Rare Immunodeficiency, autoinflammatory, autoimmune and paediatric rheumatology Diseases - For all patients with rare immune disorders in Europe
ERN ReCONNET 🇪🇺
@ern_reconnet
🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
ERN-ITHACA
@ernithaca
European Reference Network on congenital malformations and rare intellectual disability (ERN-ITHACA).
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.
Emma Jones
@emma33653404
Renal Nurse. KESS2 PhD student @BangorUni researching ‘Why do people say “no” to a kidney transplant’ @kidneywales @bcuhb. Trustee @kidneywales
A
@spakxs
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.
@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