Ines @ineshernando.bsky.social Health policy, Health systems, Global health, equity, rare diseases. Arts and book lover. Unos días atlántica y otros más mediterránea, dependiendo de qué viento sople.
Healthcare Director @eurordis. Views expressed are my own.
L-W-O Community @lwocommunity.bsky.social L-W-O Community established 2013. Supports Primary and Secondary Lymphoedema by promoting emotional wellness, lymphatic health, selfcare and patient empowerment. Please visit our website https://www.lwocommunity.co.uk
ERN EURO-NMD @euronmd.bsky.social European Reference Network for Rare Neuromuscular Diseases
SYNTHEMA @synthemaeu.bsky.social A cross-border hub to develop & validate #AI techniques for anonymization & synthetic data generation in rare hematological diseases 🔬🩸🇪🇺 #HorizonEU project
👉 https://synthema.eu/
Katie Owens @ktowens.bsky.social EUComms person and cancer thriver
Interested in public communication and literacy, especially linked to health (physical and mental) and nutrition/food safety
Views my own
@ern-cranio.bsky.social @ern-cranio.bsky.social 
Filière FAVA-Multi @fava-multi.bsky.social FAVA-Multi fédère les acteurs impliqués dans la prise en charge des anomalies vasculaires rares avec atteinte multisystémique.
Patrick BERNARD @29pat.bsky.social @Renaissance
@Renaissance29 @RenaissanceQBO
adore #MacronardsFM !...
Comptes #X (ex-Twitter) : @29Pat2 et @29Pat
Compte #threads : patrickbernardmahe
Compte #instagram: patrickbernardmahe
Compte #Facebook : Patrick Bernard-mahe,
Compte #Pinterest : 29pat🇨🇵
ERN EuroBloodNet @erneurobloodnet.bsky.social ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases.
Funded by the European Union.
@carmenqp.bsky.social @carmenqp.bsky.social 
Mildred Lundgren @mildredlundgren.bsky.social Citizen of the world, born in Ireland, based in Sweden, advocating for the common good....all inclusive, leaving no-one behind, all in this together, lets make democracy work. DMs=Block. 
Verband Angiodysplasie Schweiz @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.
ERN-RND @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/online-medical-education-for-rare-neurological-diseases/
Annabelles Challenge Vascular EDS Charity @annabellechallenge.bsky.social We support patients & families touched by #VascularEDS working with NHS EDS Service. Proud recipients of The Queen’s Award. http://VascularEDS.org 🧬
ERN eUROGEN @erneurogen.bsky.social The European Reference Network for Rare Urogenital Diseases and Complex Conditions - https://eurogen-ern.eu/
Rare Diseases International (RDI) @rarediseasesint.bsky.social RDI is the global alliance for persons living with a rare disease, across all countries and all rare conditions.
Paolo Federici @paolofederici.bsky.social Suono in una band, scrivo libri e recito in una compagnia amatoriale.
E poi presento un festival musicale (Happy Voices, a Segrate).
Intanto lavoro anche, nel mondo dei trasporti marittimi.
Scrivo post sarcastici.
DO-NOT-SEND-PRIVATE-MESSAGE-TO-ME.
Hecovan expertisecentrum vaatanomalieën @hecovan.bsky.social Carine van der Vleuten, MD, PhD
Associate Professor 🎓 Vascular Anomalies
Dermatoloog@Radboudumc 🩵 Amalia 🧡
Infantiel hemangioom 🍓
Klippel Trenaunay PROS 🧬 Hevas VASCERN-VASCA 🇪🇺 ISSVA ⚖️ by🚴🏻♀️
RASopathies Network @rasnet.bsky.social Nonprofit research advocacy org for conditions caused by dysfunctional RAS/MAPK signaling. #rasopathies #raredisease
by Stronach in Pittsburgh
HEVAS @hevas.bsky.social Support and advice for patients with hemangiomas, vascular anomalies and over/undergrowth syndromes #ISSVA #Vascern #Hecovan
www.hevas.eu
Medics for Rare Disease @medicsforrare.bsky.social Our vision is a world in which there is equitable healthcare for everyone
European Reference Network - MetabERN @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/
ERDERA @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.
JARDIN Joint Action @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’)
CMTCOVM @cmtcovm.bsky.social CMTC-OVM is a worldwide non-profit community that aims to improve the quality of life of people suffering from rare vascular abnormalities (blood vessel abnormalities), such as CMTC and KTS, their families, and stimulate scientific research.
Laurence M Boon @lmboon.bsky.social 
Veronika Dvorakova @vdvorakova.bsky.social 
American Heart Association Journals @ahajournals.bsky.social Official account for the 14 American Heart Association Journals covering the breadth of cardiovascular & cerebrovascular disease. When you publish in, review for, or read AHA Journals, you join our fight for a world free of cardiovascular disease & stroke.
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ERKNet is devoted to improving the lives of patients with rare kidney diseases.
https://www.erknet.org
Rare Disease Clinical Trial Network @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.
Miikka Vikkula @mvikkula.bsky.social Vascular anomalist- K Kasia Urb @kasiaurb.bsky.social
Institut Imagine @institutimagine.bsky.social 🔬 Premier centre européen dédié aux maladies génétiques.
📍 Campus Necker - Enfants Malades, Paris | #Recherche #Santé #Innovation
🌐 www.institutimagine.org
Rare Genomics Institute @raregenomics.bsky.social Rare Genomics Institute (RG) is a 501(c)3 non-profit organization committed to filling the unmet needs of patients and families affected by rare diseases.
https://www.raregenomics.org/
ComPaRe, Communauté de Patients pour la Recherche @patientscompare.bsky.social Communauté de patients et plateforme participative pour accélérer la recherche médicale sur les maladies chroniques. Participez vous aussi !
JACC Journals @jaccjournals.bsky.social Official account representing the ACC's 10 #JACCJournals 📚, one of the most widely read and most impactful CV journal programs in the world 🫀 | https://www.jacc.org/
Julie De Backer @juliedebacker.bsky.social #Genetic🧬 #Cardiologist 🫀Ghent Univ Hosp Belgium🇧🇪 | Heritable Thoracic Aortic Disease |Adult Congenital Heart Disease | FESC | Proud Mom | Snoopy fan
European Society of Cardiology @escardio.bsky.social 
The Ehlers-Danlos Society @ehlers-danlos.com The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) ehlers-danlos.com
ANR - Agence nationale de la recherche @agencerecherche.bsky.social L’ANR, l’agence française de la recherche sur projets. Opérateur de France 2030.
The French national research agency #ANR #AgenceRecherche #France2030
www.anr.fr
Universität Freiburg @uni-freiburg.de Herzlich willkommen beim offiziellen Account der Albert-Ludwigs-Universität Freiburg.
Impressum: http://uni-freiburg.de/impressum
Datenschutz: https://uni-freiburg.de/datenschutzerklaerung
Marfan Trust @marfantrust.bsky.social The Marfan Trust is the sole charity in the United Kingdom dedicated to improving and saving the lives of people with Marfan & Loeys-Dietz syndromes. We support those with the condition, provide educational information, and undertake cutting-edge research.
European Commission @ec.europa.eu News and information from the European Commission. Social media and data protection policy: http://europa.eu/!MnfFmT
RareDR @raredr.bsky.social #rarediseases, #drugdevelopment, #biotech, #skiing, #books, #scuba, #travel
AFM-Téléthon @afm-telethon.bsky.social Compte officiel
L'AFM-Téléthon est une association de malades et parents de malades
Retrouvez-nous sur https://www.afm-telethon.fr
📆 #Téléthon2025 : 5 & 6 déc.
EURORDIS-Rare Diseases Europe @eurordis.bsky.social An alliance of non-profit organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Vascular Medicine @vmj-svm.bsky.social Official Journal of the Society for Vascular Medicine.
#Healthcare #PAD #VTE #Medicine #VascSky #CardioSky
Editor-in-Chief @heatherlgornik.bsky.social
Nature Reviews Disease Primers @natrevdiseaseprimers.nature.com Nature Reviews Disease Primers publishes Primers - introductory reviews on diseases and disorders - across all medical specialties. Check back each week!
RAREvolution @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 🦓
Hôpital Cochin - Port-Royal AP-HP @hopitalcochin.bsky.social Hôpital de proximité et de spécialités situé dans le 14e arrondissement de Paris.
https://hopital-cochin-port-royal.aphp.fr
#aphp
@sallsynt.bsky.social @sallsynt.bsky.social 
@noinvisibles.bsky.social @noinvisibles.bsky.social 
Aortic Dissection Charitable Trust @aorticdissectct.bsky.social Saving lives by improving the diagnosis of #aorticdissection, bringing treatment consistency across the whole patient pathway through #AortaEd, policy change & research.
www.tadct.org
@macaorta.bsky.social @macaorta.bsky.social 
Nature Cardiovascular Research @natcardiovascres.nature.com Online-only Nature Research journal that publishes basic, translational, clinical and public health research in cardiac, vascular and blood biology.
https://www.nature.com/natcardiovascres/
Assistance Publique – Hôpitaux de Paris (AP-HP) @ap-hp.bsky.social Bienvenue sur le compte de l'AP-HP, Assistance Publique-Hôpitaux de Paris, 1er CHU d'Europe.
Nous soignons et innovons 365 jours/an.
https://www.aphp.fr/
WHO @who.int The World Health Organization (WHO) is the United Nations’ health agency, championing Health For All.
Always check the latest posts for updated advice/information.
We reserve the right to remove misinformation, spam, and hate speech under our posts.
Hôpital Bichat - Claude-Bernard AP-HP @hopitalbichat.bsky.social L’hôpital Bichat - Claude-Bernard 🏥👨🏻⚕️👩🏾⚕️ est un hôpital de l’AP-HP situé dans le 18ème arrondissement de Paris.
https://hopital-bichat.aphp.fr/
http://linktr.ee/hopitalbichat
Bluesky @bsky.app official Bluesky account (check username👆)
Bugs, feature requests, feedback: support@bsky.app