Udninternational
@udniss
The Undiagnosed diseases network international (UDNI) was established in 2014, (UDNI); it was founded by five participants countries including Italy.
ID: 4294418417
https://www.udninternational.org/ 27-11-2015 08:39:54
166 Tweet
319 Followers
140 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
Zafer Yüksel
@zafush
Medical Geneticist, MD / Guitars @ Hope to Find / Made in Eskişehir
Dariel Ashton-Beaucage, PhD
@darielab
medicine - genetics - genomics
Fizza Akbar
@fizzakbar
Genetic Counselor & Genomics Researcher, Senior Instructor @AKUGlobal MSc. Genomic Medicine, Grad Cert. Alumnus @FCCollege @OfficialUoM @UBC🧬🇵🇰
Camila Simoes
@cami_simoes
🇺🇾🧉 MSc in Bioinformatics - PhD student, interested in genomic medicine 💻🧬
AMER
@eerrmolina
AMER Asociación Molinense de Enfermedades Raras. Ayúdanos a defender los derechos de una Inmensa Minoria. Fué fundada por @danielmriquelme en el año 2009.
Stephen C. Ekker, Ph.D.
@scekker
Entrepreneur scientist. ZebrafishRcool. Moving innovation at UTAustin, Dell Med, Tx Health Catalyst. Active with LEAH Labs, LifEngine Tech, Forjazul. Posts=mine
Annet Simons
@annetsimons
Julie Makani
@juliemakani
Scientist|Doctor - Sickle Cell Disease. Biomedical Science in Africa. Health. Education. #Sicklecell Helpline 0769680688
prashant
@prashant9313
alison
@alisonjeaton
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.
hmorsy
@hmorsy80
Post doc | Neurogenetics @IonSynapse @ICGNMD | Bioinformatics @UCLION🇬🇧 | Clinical Geneticist 🇪🇬 | MD, PhD
Amanda Pichini
@amandapichini
Clinical Director @GenomicsEngland 🧬Genetic counsellor 🧬 proud Canadian 🍁 loves a good food market 🧺 own views
Rabia
@oversharingtr
Gurpreet Kaur, PhD (She/Her)
@gurpreet_bioin4
#WomenInSTEM #Mom #Bioinformatics & #Computational #Genomics Scientist 🖥#RareDiseases 🧬 #Cancer @UABgenetics #FulbrightAlumna| Be the change you want to see!
Claudia Gonzaga-Jauregui
@cgonzagaj
Human Geneticist/Genomicist working on Mendelian & rare genetic disorders to enable Precision Medicine. Tweets/opinions are my own. 🇲🇽 @cgonzagaj 🐦🦣☁️🧵
Marijke R. Wevers
@marijkerwevers
consultant clinical geneticist ♡ Yorkshire ♡ Devon ♡ violin Trying to reduce my time on X
Domenica Taruscio
@dtaruscio
MD, Former Director of the National Centre for Rare Diseases @istsupsan . TW are personal views. RT≠endorsement facebook.com/domenica.tarus…
Bovarisme
@bovarisme
Me myself
UDN
@udnconnect
The Undiagnosed Diseases Network has archived this account. Past posts are preserved for reference.
Ruby Dawes
@ruebenaedawes
Sydney girl, @AustAmFulbright recipient 2020-2021 with @theFourier2k. PhD @kids_research 2022, now postdoc with @nickywhiffin at @bdi_oxford. Splicing & smORFs!
Matthew Wheeler
@mwheelermd
Husband, father to three wonderful kids, gpa to two cats. Stanford cardiologist scientist. genetics of rare disease. UDN GREGoR MoTrPAC. @[email protected]
Filippo
@filippo46c
❤️ Grateful | ♿️ Living with a (still) undiagnosed disease | 😊 “Whatever you decide to do, make sure it makes you happy.” (Paulo Coelho)
Telefono Verde Malattie Rare
@tvmr_cnmr
Il Telefono Verde Malattie Rare (TVMR) è una helpline dedicata alle malattie rare, istituita presso il @cnmr_ISS, risponde al n. 800.89.69.49.
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
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.
Anish Kar
@anishkar11
বাঙ্গালী🚊#xaverian #endocrinologist lifelong #internist-in-training🩺⚕️ #bonehealth🦴#raredisease advocate vocalist scifi/fantasy nut #medtwitter #endotwitter
Gerrye Mubungu
@gmubungu
MD, PhD. University of Kinshasa Pediatrics and Genetics
(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 💜
M. Leonor Bustamante
@lbustamante_m
Soy médico Psiquiatra y PhD. Investigo en y enseño genética. Trabajo en Fundacion Diagnosis p acercar la genética a la clínica. Aquí solo mi opinión
Sebastian.Sechs4
@ssechs4
Dario Camellino
@dcamellino
Rheumatologist with special interest in giant cell arteritis and polymyalgia rheumatica. Responsible for rare diseases @Asl3. Dad of 1 gorgeous boy.
RareBoost
@rarediseasesibg
The RareBoost ERA Chair project aims to establish Izmir Biomedicine and Genome Center as a center of excellence in rare and undiagnosed diseases research.
Allan Bayat, associated professor
@allanbayat
Pediatrician/translational researcher #Epilepsy #Genetics #PrecisionMedicine #CerebralPalsy #RareDisorders #EpilepsyAwarenessMonth #DanishEpilepsyCenter
Marianne Olson
@olsonmarianne1
Cincinnati GCGP '24 🧬
Emma Mizrahi Powell ✨
@emma_mizrahi
Genetic Counselor 🧬 | she/her/hers 🏳️🌈 (all views are my own!)
Asociación ADEE
@adee_esp
Asociación de Personas con Acondroplasia y otras Displasias Esqueléticas. Queremos avanzar en derechos y eliminar estereotipos. Lo contamos en primera persona.
Maria J Barrero
@maria_j_barrero
#RareDiseases researcher-IIER @saludISCIII Investigación en #EnfermedadesRaras
Canadian Association for Porphyria
@porphyriacanada
Providing information and support to Canadians with porphyria and their families since 2014.
Andressa silva
@amdsilva1989
Tamara Brtan
@tamarabrtan
CureTSC! BSN, RN.
Teach RARE
@edu4rare
beacons.ai/teachrare Teaching and learning for rare diseases, undiagnosed diseases, and special education.
Abdurrahman TUFAN
@dr_atufan
Rheumatology | Autoinflammatory Diseases | Immune Dysregulation | Wearable IOT | Gazi University | NIH | NHGRI |
Grazia Falcone
@grafalcone
Anantha Korrapati
@akorrapati18
UAB Heersink School of Medicine | NIH IRTA Fellow ‘23-‘24 | Neuroscience | Genetics | Health Policy | Environmental Health
Rıza Can Kardaş
@rizacankardas
Fellow, Gazi University Division of Rheumatology
Nino Adamia
@ninoadamia7076
Canadian Rare Disease Network (CRDN)
@canadianrdn
Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
Anvil Panow
@anvilpanow
Self-employed artist producing online publications. Snapchat snapchat.com/t/cnyRUm4X Zangi services.zangi.com/dl/conversatio…
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.
JARDIN Joint Action
@jardin_eu_ja
JARDIN is created to improve the accessibility of the ERNs for people living with rare diseases or complex conditions in EU member states.
CERPOHCHI
@cerpohchi
1° Congreso de Enfermedades Raras, Poco Frecuentes y Huérfanas que se realizará del 13 a 15 de noviembre próximo en 🇨🇱. Más información en: [email protected]
Marcia Athena
@marcia_athena
Xiangyu Zhao
@xiangyu_zhaoo
Say big HI to the world. Life should be what it should be.
Dr Isabel Lopez Sanchez
@drisabellopez
Research Manager at Mito Foundation and mitochondrial scientist
The North West Genomic Laboratory Hub
@nwglh
News and updates from the GLH for the North West led by @MFT_nhs, working together with @nwgmsa @LiverpoolWomens, @NWCGMC and @lplclinlabs.#NHS #Genomics
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]
ERN ReCONNET 🇪🇺
@ern_reconnet
🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
Natali Minasyan
@minasyan_natali
🇦🇲
Share4Rare
@share4rare
💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
Michael T. Zimmermann
@mtzimmermann
Developing Structural Bioinformatics for Genomics Data Interpretation. Studying rare diseases, and the ultimate rare disease, cancer (each unique). he/him