European Reference Network - MetabERN
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/
@alanfinglas.bsky.social
Founder/Research Manager of MSD Action Foundation, my son is affected by Multiple Sulfatase Deficiency, a clinically devastating Lysosomal Storage Disorder.
@ern-rnd.bsky.social
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/
@teamitresearch.bsky.social
Research management organisation - Empowering collaborative research and innovation for a healthier future. 🔗 https://teamitresearch.com/
@realised-ihi.bsky.social
Transforming Clinical Trials for Ultra-Rare Diseases. 🔗 https://realised-ihi.eu/
@cp-cellmetabolism.bsky.social
A Cell Press journal publishing cutting-edge research in metabolism biology, from molecular/cellular biology to translational and clinical studies.
@erknet.bsky.social
ERKNet is devoted to improving the lives of patients with rare kidney diseases. https://www.erknet.org
@rarediseasectn.bsky.social
HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core.
@rarediseasesint.bsky.social
RDI is the global alliance for persons living with a rare disease, across all countries and all rare conditions.
@ec.europa.eu
News and information from the European Commission. Social media and data protection policy: http://europa.eu/!MnfFmT
@erneurogen.bsky.social
The European Reference Network for Rare Urogenital Diseases and Complex Conditions - https://eurogen-ern.eu/
@vascern.bsky.social
Advancing the diagnosis, treatment, and care of patients with rare multisystemic vascular diseases across Europe. 🔬 Evidence-based guidelines | 🌍 Cross-border collaboration | 📚 Education 📌 Visit us: www.vascern.eu
@epha-eu.bsky.social
The European Public Health Alliance is a change agent – Europe’s leading NGO alliance advocating for better health. Reposts are not endorsements. #PublicHealth
@cdcgov.govmirrors.com
Mirrors posts from the CDCGov twitter account. No affiliation with government. GovMirrors starter pack here: go.bsky.app/6hGESnZ
@eupatientsforum.bsky.social
We are the leading voice of patient organisations in Europe.
@filiere-tetecou.bsky.social
Filière coordonnant la prise en charge des malformations rares de la tête, du cou et des dents en France. https://linktr.ee/filiere_tetecou
@nwglh.bsky.social
News and updates from the GLH for the North West led by @MFT_nhs, working together with @nwgmsa @LiverpoolWomens, @NWCGMC and @lplclinlabs.#NHS #Genomics
@ipopi.bsky.social
IPOPI, International Patient Organisation for Primary Immunodeficiencies, is a non-profit international organisation and the leading advocate for primary immunodeficiency (PID) patients worldwide
@rarevolution.bsky.social
Account for the BLACKSWAN Foundation and RE(ACT) Community #RAREvolution, stand up for research on #rarediseases blackswanfoundation.ch http://www.react-congress.org 🦓
@alitimumab.bsky.social
#MedicalAffairs | #PatientCentricity #PrecisionOncology 🧬 #RareDiseases #CardioMed 🫀 #Evidence #Innovation #Care #Diversity #Inclusion #MedSky #LCSM 🫁 #PCSM 👨🏻
@phenylcetonurie.ca
🤔 Je parle de saine santé globale et de vie active avec la phénylcétonurie. 🫐 8g de protéines par jour. 🤔 I talk about healthy overall health and active living with phenylketonuria. 🫐 8g of protein per day.
@euregha.bsky.social
Bringing European Regional and Local Health Authorities together to exchange practices and join forces to achieve #HealthinAllRegions! #Regions4Health
@erdera.bsky.social
Advancing prevention, diagnosis and treatment research for the 30 million people living with a rare disease in Europe. 🔗 erdera.org Co-funded by European Union's #HorizonEU Research & Innovation programme. Views expressed are of authors only.
@ehmainfo.bsky.social
EHMA is a membership organisation committed to excellence in #HealthManagement across Europe | We are a proud host of the Annual EHMA Conference
@jwmdrc.bsky.social
Performing world-class translational research to bring diagnosis, care and therapy to people with neuromuscular disease
@igagaucher.bsky.social
The IGA is an international charitable organisation representing the interests of Gaucher patients around the world. Gaucher is an ultra-rare genetic disease. gaucheralliance.org
@journalnd.bsky.social
Facilitates progress in understanding the molecular genetics/correlates, pathogenesis, pharmacology, diagnosis and treatment of acquired and genetic NDMs. Editors: Carsten Bönnemann and Hanns Lochmüller. https://journals.sagepub.com/home/JND
@medicsforrare.bsky.social
Our vision is a world in which there is equitable healthcare for everyone
@eu-openscreen.bsky.social
We are the European Research Infrastructure Consortium for chemical biology, supporting life science research and its translation to medicine and agriculture.
@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
@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
@mayocliniccancer.bsky.social
@jimd-editors.bsky.social
The Journal of Inherited Metabolic Disease (JIMD) is the official journal of the Society for the Study of Inborn Errors of Metabolism (SSIEM). Social Media maintained by James Nurse
@jpvantintelen.bsky.social
clinical geneticist, Department of Genetics UMC Utrecht, the Netherlands. Professor of clinical genetics/cardiogenetics https://research.umcutrecht.nl/researchers/peter-van-tintelen/ klinisch geneticus, hoogleraar klinische genetica/cardiogenetica 🇳🇱♿️
@m-arent-p.bsky.social
Mutter einer Tochter mit #MTP-Mangel, Leben mit einer Fettsäurenoxidationsstörung #FAOD #RareDisease Gründungsmitglied vom Fett-SOS e.V. www.fett-sos.com | Ärztin #Allgemeinmedizin #Arbeitsmedizin
@coe.int
46 countries working together to promote #HumanRights #Democracy #RuleOfLaw
@avrilbdaly.bsky.social
Health equality advocate. Animals, Art, Anthropology. Living in Dublin, working at Retina International. Views my own.
@bbmrieric.bsky.social
Pan-European network to support biobanking and biomolecular research. Co-funded by 🇪🇺 within EU Horizon 2020 Research Infrastructures programme
@rareireland.bsky.social
@francescoflo.bsky.social
Building bridges among patients, academia, decision makers & industry to deliver #PersonalisedMedicine. RS/follow ≠ endorsement
@avrilkennan.bsky.social
CEO, Health Research Charities Ireland @hrci.bsky.social (views own). PhD in genetics. Ambitious for a better world through collaboration & inclusion. She/Her 🤹♀️ PPI | research impact | health data | evidence-based policy | genomics | rare diseases...
@discoverjrnls.bsky.social
Springer Nature’s new series of fully #openaccess journals, covering hot topics from across all disciplines and focusing on speed, service and integrity.
@thelancet.com
Welcome to The Lancet, one of the world’s leading medical journals, published weekly since 1823. 🌐 thelancet.com
@springernature.com
Leading research publisher empowering researchers, educators, and health professionals with our trusted brands for 180+ years. #BePartOfProgress https://group.springernature.com/gp/group Site notice http://bit.ly/2oAyLi1
@mpspapas.bsky.social
MPS Lisosomales Asociación sin ánimo de lucro declarada de utilidad pública que trabaja día a día para dar a conocer las enfermedades Lisosomales. mpslisosomales.org
@biomedcentral.bsky.social
A pioneer of sustainable open access, where research is always in progress.
@eatris.bsky.social
The European Research Infrastructure for Translational Medicine #EU_RI. Supporting research communities translate scientific discoveries into #patient benefit.