Sergio Merz, M.A. @sergiomerz.wsocial.eu Ich bin studierter Sozialwissenschaftler. Wissenschaft und Gesellschaft🔎 Themen: Verwaltung & Politik
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🌹 @locoleo98.bsky.social Working my dad at private ministry in president social party and later honors president t at socialist party and my nest friend it's 2president at centrist party president one and iam friends at 4 president ecologie party and my family have5shipbrocker
@martinff.bsky.social @martinff.bsky.social 
Miikka Vikkula @mvikkula.bsky.social Vascular anomalist
lylas @connard2virus.bsky.social de gauche donc antispéciste et inversement
Deborah Weeks/A Woman for An Eternity @deborah-10.bsky.social 🌟I’m a 73 year old Humboldt hippie, feminist, socialist democrat. Proud mother of two grown men. No grandchildren, 5 cats and 2 dogs plus 3 grand dogs with 1 grand cat. A Sagittarius put on this planet in 1952.
🚫NO DM’s🚫Porn🚫Solicition🚫😱
Public Health Committee @sant.europarl.europa.eu European Parliament Committee on Public Health. Managed by EP press service. Reposts ≠ endorsements.
@slouisse.bsky.social @slouisse.bsky.social 
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Nicolas Timmermans @nicolastimmermans.bsky.social KU Leuven PhD Candidate
Vascular Surgery (lymphology)
Clinical & Experimental Endocrinology
@lizziedown.bsky.social @lizziedown.bsky.social Art, craft and science gurl.
Just Josy @justjosy.bsky.social your favorite distraction
fresh pics every hour
uncensored on my private page
onlyfans.com/justjosy/c6
Retention Project @retentionproject.bsky.social RETENTION is a H2020 funded project conceived to support clinical decision making, clinical monitoring and data-driven interventions for heart failure patients in need of ventricular assist devices (VAD) and patients who received a heart transplant.
@ern-cranio.bsky.social @ern-cranio.bsky.social 
@medbenabdelhak.bsky.social @medbenabdelhak.bsky.social 
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
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/
@mha-67.bsky.social @mha-67.bsky.social 
@louise-bonnet.bsky.social @louise-bonnet.bsky.social 
Andrea Dewhurst @andreadewhurst.bsky.social 
Joanne Simmonds @josimmonds.bsky.social I’m on submission with my rewritten Bath Spa MACW novel.
Labour unitary candidate for Lyngford May 2027.
I do arts, crafts and go swimming with AuDHD and hEDS.
I write a free Substack here: https://joannesimmonds.substack.com
@sparkieheat.bsky.social @sparkieheat.bsky.social 
ERN EURO-NMD @euronmd.bsky.social European Reference Network for Rare Neuromuscular Diseases
ukmsregister @ukmsregister.bsky.social The MS Register is a ground-breaking study designed to increase our understanding of living with MS in the UK. Let's make sense of MS.
Salewa Akintilo @sakintilo7.bsky.social Asst. Director, Science Communications and Initiatives @arvoinfo.bsky.social | MSGH @NorthwesternU '17 | @penn_state'14. Health is a human right! 
Banque Nationale de Données Maladies Rares @bndmr.bsky.social Un projet du Plan national maladies rares, financé par la Direction Générale de l'Offre de Soins, visant à doter la France d’une collection homogène de données pour documenter la prise en charge et l’état de santé des patients atteints de maladies rares.
Junior Einsteins Science Club® @junioreinsteins.bsky.social Award-winning Science events for kids. Founded Ireland☘️ Scientist, Mum, speaker United Nations 🇺🇳 Fun, messy, screen-free hands-on, STEM fun Ireland 🇮🇪 UK 🇬🇧 Canada 🇨🇦 Saudi Arabia 🇸🇦 Luxembourg 🇱🇺 Ukraine 🇺🇦 International Schools partnerships. Franchise.
Open Research and Public Engagement Roadmap @engagedroadmap.bsky.social Co-Creating Ireland's Public Involvement in Open Research Roadmap
ENGAGED is building a national roadmap to shape public involvement in open research in Ireland. We believe that research can and does play an important role in tackling societal challenges.
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.
Yves Dulac @yvesdulac.bsky.social Pediatric cardiologist CHU Toulouse France
Coordinateur Centre de Référence maladies rares ( Marfan et aortiques rares) FAVA-MULTI
Coordinateur Plate Forme Expertise Maladies Rares (PEMR) CHU Toulouse
Marfan Congenital cardiology Pulmonary hypertension- G Gülsüm Kayman K. @gulsumkayman.bsky.social Postdoc studying cardiac regeneration in zebrafish @CR_CHUSJ @UMontreal
@carmenqp.bsky.social @carmenqp.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.
@em-by.bsky.social @em-by.bsky.social 
Dave Grainger @degrainger.bsky.social Developmental biologist studying endothelial cell differentiation and heterogeneity
Postdoc in the Stone Lab - Institute of Developmental and Regenerative Medicine, Oxford, UK
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’)
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🇨🇵
Chronic Illness Friendship Club @chronicillnessfc.bsky.social An inclusive community, resource hub & mutual support for people w/chronic & invisible illness. Friendship & Digital hangouts! 📍SF
#EDS #MCAS #POTS #ME #PMDD #AuDHD #PTSD
Mental health advocate, indigenous #LGBTQIA+🍉
Sign up at the form below🤍✨
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. 
SEDSConnective @sedsconnective.org The 1st charity for Hypermobility and Neurodivergence est.2018
Chair @JGjanegreenmbe.bsky.social
Patrons:
Dr Eccles Dr Spiritos
Web: www.sedsconnective.org
Link: https://linktr.ee/SEDSConnective
Sara Nunes Vasconcelos, PhD she/her/hers🇨🇦🇧🇷 @saravasconcelos.bsky.social Regen. med, blood vessels, cardiovascular disease, tissue engineering, OOAC, diabetes
Senior Scientist UHN. Associate Prof UofT. John Kiston McIvor Endowed Chair in Diabetes Research.
www.vasconceloslab.com
XLH Danmark @xlhdanmark.bsky.social XLH Denmark unites and supports people living with XLH & HPP – patients, families, and caregivers. We raise awareness, promote research, and work to ensure equal access to care, treatment, and early diagnosis, both at the national and european level.
@drdarioteplisky.bsky.social @drdarioteplisky.bsky.social 
HermineLab @herminelab.bsky.social The official account of the Hermine Lab, the “Laboratory of Molecular Mechanisms of Hematological Disorders and Therapeutic Implications” at Institut IMAGINE @institutimagine.bsky.social
SMA Europe @sma-europe.bsky.social SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. All together. One goal.
Visit our website: https://www.sma-europe.eu/
@paradise-project.bsky.social @paradise-project.bsky.social Personalised relapse prediction in #autoimmune #disease #vasculitis.
@ERAPerMed funded #JTC2022
https://paradise-project.eu/
Laurent Joubert @ljoubert.bsky.social Directeur des opérations, Agence du Numérique en Santé
@usli.bsky.social @usli.bsky.social - S @samri.bsky.social @samri.bsky.social
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.
OHSU Surgical Data and Decision Sciences Lab @ohsusurgdata.bsky.social Surgery and Informatics. Improving the delivery of surgical care through innovation, education, scholarship and entrepreneurship. Oregon Health & Science University Department of Surgery.
@commsma.bsky.social @commsma.bsky.social 
Catherine Stratton, MPH @cathsmstratton.bsky.social Epidemiology PhD(c) @UofT; @CIHR_IRSC CGS-D & @fdnPETF Scholar; MPH @Yale; VP & Research Chair @moyamoyafoundation #KnowledgeTranslation #KnowledgeSynthesis #RareDisease #PainScience #Disability
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
Katie Coveney @drkatiecoveney.bsky.social Reader in Sociology at Loughborough University
Researching living with rare disease, sleep, reproduction, chronic illness
Melissa Kinch @melissa-kinch.bsky.social PhD candidate UCD | Child, Adolescent & Family Research | Patient Voice & Engaged Research | Rare Disease Research | Methods Enthusiast | All views are my own
CVDLINK Project @cvdlink.bsky.social Unlocking data-driven solutions for cardiovascular care.
Funded by the European Union.
Our website: https://cvdlink-project.eu/
Sign up for our newsletter: https://zcv2-zcmp.maillist-manage.eu/ua/Optin?od=12ba7edd498a&zx=14ae0cd762&lD=12af9df89658a619&n
Elisa Boscolo @boscololab.bsky.social Vascular Biologist
MyScienceWork @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
Julie Doberne MD PhD @juliedoberne.bsky.social Cardiac Surgeon & Informatician, Oregon Health & Science University | Faculty, OHSU Surgical Data & Decision Sciences Lab
Renegade Research @renegaderesearch.bsky.social Patient-led 501c3 nonprofit focused on #MECFS & #LongCovid 💙 https://linktr.ee/renegaderesearch • Runs @remissionbiome.bsky.social
Medics for Rare Disease @medicsforrare.bsky.social Our vision is a world in which there is equitable healthcare for everyone
EARA @eara.eu European Animal Research Association | Informing about the importance of biomedical research using animals and the progress of new approach methodologies.- C @cseinturier.bsky.social @cseinturier.bsky.social
Teamit @teamitresearch.bsky.social Research management organisation - Empowering collaborative research and innovation for a healthier future.
🔗 https://teamitresearch.com/
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.
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/
Dare to be Rare @daretoberare.org Our mission: CURE THIS
All sales from Dare to be Rare go directly to funding research for the cause you choose at checkout. To shop, learn more, or become a partner, check out daretoberare.org
Mennonite Mom (she/her) ❤️🩹🥄💙🌊💙 @mennonitemom.bsky.social Follower of Jesus, Cranky Old Broad, Mennonite mom&wife, lover of books, world, peo, poetry & art. Disabled Spoonie🥄(MCTD, RA, Sjogrens,lupus) Fierce Mama Bear 🏳️🌈 of lesbian daughter (33) and pan & autistic son(28) 🖤🤎❤️🧡💛💚💙💜
HEVAS @hevas.bsky.social Support and advice for patients with hemangiomas, vascular anomalies and over/undergrowth syndromes #ISSVA #Vascern #Hecovan
www.hevas.eu
@joraltron.bsky.social @joraltron.bsky.social 
Stephan Huveneers @huveneerslab.bsky.social Associate Professor at Amsterdam UMC, University of Amsterdam / Vascular Biology / Mechanotransduction / Junctions / Adhesion / Cell migration / Angiogenesis / Atherosclerosis / Capillary malformations
/ https://www.medicalbiochemistry.nl/stephan-huveneers
raising_rareness (Lyndsey Walsh) @raising-rareness.bsky.social Raising awareness of rare diseases & conditions
#2q24.2 Advocating for my daughter & Rare Community 💗
Mum of 3
#AAC #AugmentativeAndAlternativeCommunication
MA Archaeology UCC
Opinions my own
🇮🇪
Pam Cusick @pjcusick.bsky.social Wife, mom, rare patient-healthcare research matchmaker, and aspiring yogi.
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🚴🏻♀️
Ricardo Fernandes @dondonric.bsky.social Pediatric research & clinical trials, resp/allergy, pharmacology & epi. Conect4children, STAND4Kids networks and ULisbon. Skeptical optimistic, nostalgic, and often (nothing but) a dreamer. Views my own
CMcG Rheum @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
Unremarkable Me @unremarkableme.bsky.social Health and Wellness
EDS & hEDS Awareness
Chiari Malformation Awareness
Chronic Illness Awareness
Mass Cell Activation Syndrome
POTS
I have been fighting EDS, Chiari Malformation, Mass Cell Activation Syndrome, Scoliosis & POTS for 15 years.
JenOfAllTrades @vengefulraven.bsky.social Justice seeker, book devourer, art admirer, science enthusiast, rare chronic illness fighter.
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 🧬
40:40 Recruitment - celia@4040recruitment.co.uk @4040rec.bsky.social We are a Specialist Recruitment Partner within the Pharma, Healthcare, Medical Devices & MedTech arenas throughout UK & Ireland. We cover all levels of roles in Commercial, Sales, Market Access, Market Research, Marketing, People Management & Medical
Nancy Hamilton @n18e.bsky.social Vegan cycliste living in Paris intested in animal rights, access to health, electronic music, social justice, and much more. 
@lappskavallhunden.bsky.social @lappskavallhunden.bsky.social 
@vascdok.bsky.social @vascdok.bsky.social 
RASopathies Network @rasnet.bsky.social Nonprofit research advocacy org for conditions caused by dysfunctional RAS/MAPK signaling. #rasopathies #raredisease
by Stronach in Pittsburgh
Marta Almagro @martaalmagro.bsky.social Bronchiectasis Patient Advocate, living with it since I was child. Pseudomonas are also my loyal companion :D
JWMDRC Patient Registries @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
Camilla Ferreira Wenceslau @camillawenceslau.bsky.social Scientist, Mother, and Runner 🏃🏽♀️Vascular Biology ❤️🧬 WenceslauLab.com @University of South Carolina School of Medicine, Columbia, SC. Posts = mine / personal views 
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.
Veronika Dvorakova @vdvorakova.bsky.social 
@angelaperon.bsky.social @angelaperon.bsky.social Clinical geneticist
Laurence M Boon @lmboon.bsky.social 
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.- K Kasia Urb @kasiaurb.bsky.social
Vittorio Rispoli @vittoriorispoli.bsky.social 
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 🦓 #REACTCongress
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
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.