ERN-RND
European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients.
Free webinars: https://www.ern-rnd.eu/education-training/webinars/
@pcavanderwel.bsky.social
Solid-state NMR, Zernike Institute, university of Groningen. Posts = personal. Spectroscopy, biochemistry, structural biology, amyloid & condensates, Huntington disease, membrane biophysics, biomaterials etc
@fafvev.bsky.social
Auf der Suche nach Behandlungen & Heilung für Friedreich-Ataxie
@rareireland.bsky.social
@ecdc.europa.eu
We’re the European Centre for Disease Prevention and Control. We aim to strengthen EU’s defences vs infectious diseases. Here to promote public health.
@22qirl.bsky.social
Parent group raising awareness of #22q Working toward integrated care for 22qDS and other rare conditions. Do it 'with' us, not 'to us' #PatientPartnership
@angiodysplasie.bsky.social
The Swiss Angiodysplasia Association is an organization founded by people affected by angiodysplasia to offer support to others affected and their families. Our focus is on the interests and rights of people living with a rare vascular malformation.
@sjhdublin.bsky.social
Official account for Ireland’s largest acute teaching hospital. This account is not monitored 24/7 RCN:20017583. https://linkin.bio/sjhdublin
@tjryan.bsky.social
Neuroscientist| Professor at Trinity College Dublin | CIFAR Global Scholar| P.I. of Ryan Lab at Trinity College Institute of Neuroscience. @tjryan.bsky.social
@johanneslevin.bsky.social
Professor for Clinical Neurodegeneration at LMU Munich; Deputy lead of clinical research at German Center for Neurodegenerative Diseases (DZNE), site Munich; Chief Medical Officer at MODAG GmbH. --> Passionate about therapy development, Bayern & Betis
@medicsforrare.bsky.social
Our vision is a world in which there is equitable healthcare for everyone
@rare-revolution.bsky.social
RARE Revolution is a FREE, quarterly digital magazine for the Rare disease community and those wishing to learn more and be inspired by their stories. It seeks to give RARE patients and the charities that represent them a voice to be heard on their terms,
@camrare.bsky.social
Making rare disease an everyday conversation. CamRARE is a charity empowering rare disease communities & fostering cross-sector collaboration to improve outcomes for those affected. #RareDisease Local | National | Global www.camraredisease.org
@nordrare.bsky.social
NORD is a patient advocacy organization leading the fight to improve the lives of rare disease patients. Alone we are rare. Together we are strong.® www.rarediseases.org
@cathsmstratton.bsky.social
Epidemiology PhD(c) @UofT; @CIHR_IRSC CGS-D & @fdnPETF Scholar; MPH @Yale; VP & Research Chair @moyamoyafoundation #KnowledgeTranslation #KnowledgeSynthesis #RareDisease #PainScience #Disability
@drwillscotton.bsky.social
• Consultant Neurologist RWT - Movement and Cognitive disorders • Honorary Consultant Queen Elizabeth Hospital Birmingham • NIHR West Midlands Specialty Lead for Neuro-degeneration and Dementia • Honorary post-doctoral researcher, John Hardy Lab UCL
@jardinjointaction.bsky.social
To improve the accessibility of the ERNs for patients across Europe, the EU has funded a pioneering 3-year project involving all member states (MS) plus Norway and Ukraine, the Joint Action on Integration of ERNs into National Healthcare Systems (‘JARDIN’)
@lancetrh-europe.bsky.social
The Lancet Regional Health-Europe publishes #OpenAccess research that advocates change in clinical practice & health policy in Europe. 🌐 https://www.thelancet.com/journals/lanepe/home
@eubrain.bsky.social
@ernmetabern.bsky.social
The European Reference Network for Rare Hereditary Metabolic Disorders (MetabERN). A better future for Rare Inherited Metabolic Disease patients. Visit us 🔗 https://metab.ern-net.eu/
@mysciencework.bsky.social
Empowering research institutions with custom open-source institutional repositories, CRIS, grant management systems, & much more! | Advocates of #OpenScience and #OpenAccess | Paris 📍 🔗 www.mysciencework.com
@rdndlab.bsky.social
RDND Lab at King’s College London led by Cristina Dias. Clinical Geneticist and Rare Disease researcher. Rare Conditions, neurodevelopmental disorders of chromatin regulation and chromatin remodeller-TF interactions. https://tinyurl.com/rdndkcl
@ctgct.bsky.social
New center at National Institute of Chemistry in Slovenia focused on translational research of gene and cell therapies for #RareDisease and #Cancer, funded by the EU, the Slovenian Ministry of Higher Education, Science and Innovation, and UKRI.
@jwmdrc.bsky.social
Performing world-class translational research to bring diagnosis, care and therapy to people with neuromuscular disease
@thelancetendo.bsky.social
Your leading source of international, cutting-edge research, review, and opinion in clinical #diabetes and #endocrinology. IF=44·0. 🌐 thelancet.com/journals/landia/home
@ki.se
Science news from the medical university Karolinska Institutet (KI) in Sweden. Our vision is to advance knowledge about life and strive towards better health for all. https://ki.se/
@ahoischen.bsky.social
Genomic technologies: WES/WGS, long-read sequencing, optical genome mapping, somatic mutations; Immuno-genomics: rare diseases; immunodeficiencies; inborn errors of immunity; clonal hematopoiesis https://shorturl.at/MxQ7O https://www.immuno-genomics.com
@dercodedeslebens.bsky.social
Hier gibt’s Fun Facts, spannende Studien & Interviews aus dem Podcast Code des Lebens. Folgen für mehr DNA-Wissen! 🎙️🔬 Entdecke die @ghga.bsky.social Podcasts hier https://www.ghga.de/de/podcasts und überall, wo es Podcasts gibt.
@ehdn-news.bsky.social
European Huntington's Disease Network newsletter. Editor: Catherine Deeprose. Views are my own and RTs are not endorsements. Email: newsletter@ehdn.org
@jgjanegreenmbe.bsky.social
Founder @SEDSConnective.org Fellow FCCT / UK Rep. EFNA CAB / exAHT / MA Ed / exnational lead ND / Keynote CONNECTIONS neurodivergence Hypermobility Disabled often discombobulated / Parent / carer MBE for services to neurodivergent hypermobility folk 202
@hdai-ie.bsky.social
HDAI RCN 20025656. Sharing news on Huntingtons Disease /connecting to the international HD community. http://huntingtons.ie
@medicastra.medsky.social
#Hospital, #MD, #Rheumatology, UK based. A chemistry PhD & pharma bg, came to medicine late Scrolling is a distraction from taking action. Pick some concrete way to help & get to it. @twofishnocat.bsky.social for the likes/hobbies stuff
@helenwalkerncl.bsky.social
UK Myotonic Dystrophy & FSHD Patient Registries Manager at JWMDRC. Pls follow: @jwmdrc-registries.bsky.social / @jwmdrc.bsky.social (she/her) *Views my own* #neuromuscular #nmd #PatientRegistries #dm1 #dm2 #fshd #RareDisease #research #genetic
@robertbohan.bsky.social
Artist, Scientist, Woodland Ecologist, Statistician, Historian & former Research Scholar at the RIA | Art from Dublin, Ireland 🌈 He/Him | Sé/é Buy my work here: https://robbohan.etsy.com
@thelancet.bsky.social
Welcome to The Lancet, one of the world’s leading medical journals, published weekly since 1823. 🌐 thelancet.com
@jwmdrc-registries.bsky.social
Our neuromuscular research databases offer patients the chance to securely share their data and stories to support and access research. https://linktr.ee/jwmdrcregistries #UK #NMD #DM1 #DM2 #FSHD #SMA #Col6 #FKRP #MTM #CNM #Myotonic #MuscularDystrophy
@erknet.bsky.social
ERKNet is devoted to improving the lives of patients with rare kidney diseases. https://www.erknet.org
@euonehealth.bsky.social
@isd-research.bsky.social
Welcome to the Institute for Stroke and Dementia Research (ISD) in Munich – Director: Prof. Martin Dichgans https://www.isd-research.de/
@erc.europa.eu
European Research Council, set up by the EU, funds top researchers of any nationality, helping them pursue great ideas at the frontiers of knowledge. #HorizonEU
@eurohealthnet.bsky.social
A European partnership of public health bodies working to reduce health inequalities and improve health and wellbeing for all.
@myedf.bsky.social
The European Disability Forum defends the interests of 100 million persons with disabilities in Europe. #DisabilityRights
@eupha.bsky.social
The European Public Health Association, or EUPHA, is an umbrella organisation for public health associations and institutes in Europe.
@who.int
We (The World Health Organization) are the United Nations’ health agency championing Health For All. Always check the latest posts for updated advice/information. We will remove misinformation, spam and hate speech here. www.oneworldhealthforall.org
@epbrainhealth.bsky.social
The Coordination and Support Action BrainHealth is the preparatory phase for the European Partnership for Brain Health.
@efna.net
The European Federation of Neurological Associations [EFNA] is a non-governmental organisation (NGO) that brings together 21 pan-European neurology patient groups. Our slogan ‘Empowering Patient Neurology Groups’ encapsulates our goals as an association.
@kasiaurb.bsky.social
@afaf-asso.bsky.social
Compte de l'Association Française 🇫🇷 de l'Ataxie de Friedreich #AtaxieDeFriedreich #MaladieRare #FriedreichAtaxia ♿️ www.afaf.asso.fr/