HELIOS COST Action @HELIOSACTION
Joined March 2024-
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We’ll be at #ASCAT2025! 🎉 Join our session HELIOS CA22119: Mapping Practices & Harmonisation in Haemoglobinopathies 📅 3 Oct | 🕐 12:15–13:15 | 📍 Room 13, ExCeL London Come hear our results & meet us at our booth!
🎥 “FAIR is the bridge between data and discovery.” Dr. Adela Perolla, participant of the FAIR Principles Training School (12–14 May), shares her experience and reflects on why FAIR is crucial for the future of research. @HemaFAIRproject #OpenScience #FAIRprinciples #EUprojects
🎥 “FAIR is not the end goal—it’s the beginning of a smarter way to do science.” Dr. Marco Roos, FAIR pioneer, shares his powerful message from the FAIR Principles Training School (12–14 May). #FAIRdata #OpenScience #HemaFAIR #HELIOS #FAIRprinciples #EUprojects @COSTprogramme
🩺 TOMORROW 3PM CEST 🩺 LIVE Webinar: "Vascular Access Modalities - Technical Aspects of RCE" 👩⚕️ Dr. Verònica Pons Escoll 🏥 Hospital Vall d'Hebron, Barcelona 🔗 teams.microsoft.com/l/meetup-join/…
📢 Reminder: Tomorrow, 4 June at 15:00 CEST — our first #HELIOS webinar on Iron Overload in Hemoglobinopathies with Prof. Holger Cario (Med. Univ. of Ulm). Organized by Dr. Anna Collado Gimbert, Co-Leader HELIOS WG2. teams.microsoft.com/l/meetup-join/… #RareDiseases #Webinar
🚨 Reminder! The TCD Training is in September. The application deadline is June 8! Spots are filling up fast – apply now to secure yours! 0lyz0gsa.forms.app/transcranial-d… #TCDTraining #HELIOS #ApplyNow
🚨 HELIOS Members! 🚨 Planning to present at a top conference? We offer grants to support your oral/poster presentation! 💻 More info: heliosaction.eu ✅ Not a member? Join HELIOS! #HELIOS #Hemoglobinopathies #ConferenceGrants
🎉 Our abstract PB3837 was accepted by #EHA2025! Led by Elisabetta Mezzalira (HELIOS COST & ERN-EuroBloodNet), it explores HCPs’ knowledge of AI & attitudes toward its integration in hematology. 🔗library.ehaweb.org/eha/2025/eha20… #AI #Hematology
✨ "I came to Larnaca to learn more about data. What I didn’t expect was to reflect so deeply on what it means to share knowledge—not just store it." – Dr. Liri Seraj. Read more about our participants' experience. We thank Dr Seraj for her kind words💡 🔗 hemalily.com/making-data-hu…
One-Day Transcranial Doppler (TCD) Training School 📅 18 September 2025 | 📍 Ulm, Germany Join this hands-on training with both theoretical and practical sessions. 📝 Apply by 6 June: 0lyz0gsa.forms.app/transcranial-d… #HELIOS #TCDtraining
Wrapping up an inspiring FAIR Principles Training School co-organized by HELIOS & @HemaFAIRproject ! Grateful to our trainers, participants & organizers. Together, we’ve built skills, shared knowledge & strengthened our commitment to FAIRer data. 🌍📊 #FAIRdata #OpenScience
🩸 Today is #WorldThalassaemiaDay, a time to raise awareness, honour patients & families, and support the global fight against thalassaemia. #ThalassaemiaAwareness #RareDiseases #StrongerTogether #Thalassemia
🚨 Excited to launch the HELIOS webinar series led by Dr. Anna Collado Gimbert! 🧠 Top experts, 3 key talks: 🩸 June 4 – Iron Overload 🧵 June 17 – Vascular Access 🧬 June 19 – Alloimmunization 📍 MS Teams | 🕒 3PM CEST ✅ Open to all, no registration! #HELIOSWebinar #SCD
🚨 Final FAIR Principles Webinar! 🚨 Join us on 10 April, 13:00 CEST via MS Teams for "Federated Analysis of FAIR Data" with 👨💼 César Bernabé & 👩💼 Daphne Wijnbergen (LUMC) 🔐 Privacy-first, collaborative science! #FAIRdata #Webinar #OpenScience
🚀 Advancing Haemoglobinopathy Research! 🩸 Thanks to a HELIOS YRI Conference Grant, Dr. Liri Seraj attended the ESH Conference, presenting research on drug repurposing for haemoglobinopathy patients. 🔍Read more: heliosaction.eu/reflections-on…
On the eve of #RareDiseaseDay2025 💚💙💜I was honored to present our work on rare disease registries @EU_ScienceHub eu-rd-platform.jrc.ec.europa.eu thank you @HELIOSACTION & @HemaFAIRproject
On the eve of #RareDiseaseDay2025 💚💙💜I was honored to present our work on rare disease registries @EU_ScienceHub eu-rd-platform.jrc.ec.europa.eu thank you @HELIOSACTION & @HemaFAIRproject
🚀 Join Today’s LIVE Webinar on FAIR Principles!🧬 Topic: Introduction to ERDRI & FAIR Principles 📅 Date&Time: 27th Feb, Thurs at 2 PM CET 🔗 Link: gqr.sh/enmB Learn from Dr. Andri Papadopoulou (European Commission JRC) on advancing rare disease research!
🚨 Last Call! 🚨 Deadline: Sunday, 16 Feb! Join the FAIR Principles Training School in Larnaca, Cyprus (12-14 May 2025)! 🌍✨ 💰 Travel covered + €210/day allowance (for HELIOS members) ⏳ Apply now: redcap.ithanet.eu/surveys/?s=3XY… 🚀 Co-organised with @HemaFAIRproject
Banc de Sang Vall d'H... @BSTVH_
766 Followers 575 Following Professionals from the Blood Bank at Vall Hebron Hospital. Blood donation, transfusion medicine, apheresis and other cellular therapies. Non-institutional.
irem coşkuntan @iremcoskuntan
430 Followers 299 Following Istanbul University, Aziz Sancar IEM, Department of Genetics/PhD candidate and computer programming student, Radiotherapy technician, Biologist
Haktan Hukuk @HaktanHukuk
458 Followers 4K Following “Fiat iustitia nec pereat mundus” Dünya yıkılsa bile adalet yerini bulmalıdır. "İçinde utanmak kelimesi olmayan yeni bir lisan yarattılar. Oysa biz denizlerin
COST @COSTprogramme
16K Followers 2K Following Enabling researchers to set up their own interdisciplinary research networks in Europe and beyond. Funded by the European Union. #COSTactions
Hélène Le Borgne @HeleneLBorgne
1K Followers 5K Following European, bretonne. Public health & research at EU level, rare diseases, transplantation. Youth & Sports (RTs/follows ≠ endorsements, own views).
Andri Papadopoulou @AndriPapadopou3
200 Followers 439 Following European Commission - working on Health - Rare Diseases and Registries @EU_Sciencehub #JointResearchCentre views are my own
Muhammad Nurudeen @babsdegentle
573 Followers 3K Following PhD @Salford;Research fellow@KWASU Interests - Anatomy/Cell & Mol. Biology/Genomics of Blood Cancer & SCD) Advocate @scaf-ng @haima_health Genetic counsellor
Dr. Muhammad Asaduzza... @zamansohag08
175 Followers 896 Following Research Fellow, UiO, Norway. Assistant Scientist, icddr,b. Fogarty Fellow, UC Berkeley. Academic Editor, PLOS Global Public Health. Researcher and traveller.
Subarna Chakravorty @SubarnaChak
52 Followers 962 Following Haematologist. King's College London #SickleCellDisease #Thalassaemia Hacked out of old account @subarnac. This is my only X account. All others are fake.
GenoMed4All @genomed4all
1K Followers 970 Following #H2020 project leveraging the power of #AI for #Genomics and Personalized Medicine in Haematological Diseases 🧬 Funded by the @EU_Commission 🇪🇺
AT @at_amai
33 Followers 193 Following Marketing Manager @Australo: Marketing Lab for Research and Innovation projects to real-life application. #H2020 & #HorizonEurope.
nikoletta papaioannou @96nicoletta
42 Followers 203 Following
Muhammad @aminumed
438 Followers 177 Following FellowMLSCN (Haematology & Blood Transfusion Science), FellowMarieSSCurie (Research & Innovation), Winner 2016 A.B.U.'s IC&ICT prize for research & innovation.
Katia @katia_kims
3 Followers 352 Following
Anna Collado Gimbert�... @annacollado21
129 Followers 248 Following
Elisabetta Mezzalira @Elis_Mez
0 Followers 5 Following
ERN EuroBloodNet @ERNEuroBloodNet
2K Followers 404 Following ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases. Funded by the European Union.
Eleni Gavriilaki @elenicelli
610 Followers 2K Following Hematologist, Physician - Scientist #YoungEHA #ASH Committee on Thrombosis and Vascular Biology
Aggelos Mechili @AggelosMechili
206 Followers 780 Following
Andreas Glenthøj @aglente
78 Followers 388 Following
checco @checc000
85 Followers 2K Following Data scientist & ML | 🎓computational neuroscience | Natural skeptic | Data for good, healthcare, sustainability, fairness🌎⚕️❤️
Salvador Payán-Pern�... @salvadorpayan
3K Followers 2K Following Hematologist, #anemia and other red blood cell and #iron metabolism disorders. Hospital U. Virgen del Rocío. 🚫Zionism, NATO. 🏳️🌈
Fondazione Gianni Ben... @FondazioneBenzi
98 Followers 121 Following Fondazione Gianni Benzi is a not-for-profit organisation that promotes scientific research particularly with reference to vulnerable populations
Mariangela Pellegrini @MariangelaPell4
273 Followers 379 Following Educational & Patients Program manager for the @ERNEuroBloodNet, the European Reference Network on Rare Hematological Diseases
Carsten W. Lederer @LedererCarsten
35 Followers 38 Following Senior Scientist | Head of the Molecular Genetics Thalassaemia Department and Postgraduate Course Coordinator at the Cyprus Institute of Neurology & Genetics
Coralea Stephanou @step_coral
22 Followers 49 Following Molecular biology, Medical genetics, Biocuration, Hemoglobinopathies
Miguel Brito @MiguelBrit95941
2 Followers 29 Following
The ITHANET Portal @ithanet_portal
290 Followers 141 Following ITHANET is a community portal dedicated to thalassaemia and other haemoglobinopathies
Petros Kountouris @pkountour
175 Followers 300 Following Bioinformatics, hemoglobinopathies, rare anemias. Cypriot
COST @COSTprogramme
16K Followers 2K Following Enabling researchers to set up their own interdisciplinary research networks in Europe and beyond. Funded by the European Union. #COSTactions
Sickle Cell Midwest @sicklecellmw
1K Followers 541 Following The Uriel Owens Chapter is dedicated to supporting families in the greater Kansas City area that are dealing with sickle cell disease.
EURACAN @ERN_EURACAN
918 Followers 348 Following #EURACAN is the #ERN for #rare adult solid #cancers: 1 of the 24 #EuropeanReferenceNetworks working on a range of thematic issues. 🔗 https://t.co/nYHhrtwCqg
ASH @ASH_hematology
72K Followers 2K Following The American Society of Hematology (ASH) is the world's largest professional society concerned with the causes and treatments of blood disorders.
VJHemOnc @VJHemOnc
21K Followers 5K Following The Video Journal of Hematology & Hematological Oncology is dedicated to providing up-to-date information & international expertise
HemaFAIR @HemaFAIRproject
17 Followers 52 Following HemaFAIR is an #HorizonEurope project that aims to integrate #FAIR principles in the field of #rare #haematological #disease (2024-2027)
PNH Support @PNHSupport
470 Followers 534 Following Now at BlueSky: @pnhsupport.bsky.social. Paroxysmal nocturnal haemoglobinuria (PNH) - PNH Support is a registered CIO (no. 1161518) supporting patients.
lichterzellen @lichterzellen
66 Followers 135 Following helping those affected by the diseases PNH and aplastic anemia patient advocacy funding research member of PNHGA Impressum: https://t.co/q02iOEBQ0h
Africa Sickle Cell Or... @10003Warriors
1K Followers 2K Following Africa Sickle Cell Organization | Increasing access to Equitable Sickle Cell Care in Rural Resource Poor Communities
Give Blood NHS 🩸�... @GiveBloodNHS
87K Followers 11K Following The official account for England's blood service. Monitored 8am-6pm Mon-Fri and 8am-3:30pm Sat-Sun. If your query is urgent, please call 0300 123 23 23.
European Hematology A... @EHA_Hematology
31K Followers 414 Following Europe's largest hematology community | Connection • Education • Research • Advocacy • Patient Care | Join EHA today | #YoungEHA #HemaSphere #EHA2025
Thalassemia Canada @Thal_Canada
534 Followers 75 Following Founded in 1982 we strive to help patients and caregivers of individuals who are living with Thalassemia.
Thalassemia Patients ... @pagthals
1K Followers 410 Following Patient advocates from across India who believe there can be #NothingAboutUsWithoutUs. We talk about #safeblood #disability #thalassemiaprevention
Australian Sickle Cel... @AuSickle
869 Followers 768 Following An initiative dedicated to support people affected by Sickle Cell Disease in Australia. Executive Director @AggieMN. #SickleCell #Awareness #TogetherWeRise
The Red Cell Network @TRCNHCC
580 Followers 483 Following Haemoglobinopathy Coordinating Centre for North Central London and East Anglia (sickle cell disease) and London, South Central and South West (thalassaemia).
Global Sickle Cell Di... @GlobalSCDN
853 Followers 220 Following The Global Sickle Cell Disease Network is a platform for resources and engagement for researchers, clinicians & organizations advancing work of SCD in LMICs.
Sickle Cell Disease F... @SCDFoundation
2K Followers 564 Following Providing education and life-enhancing programs to individuals with sickle cell disease.
European Sickle Cell ... @escfederation
407 Followers 211 Following
Sickle Cell Society @SickleCellUK
11K Followers 1K Following The Sickle Cell Society supports and represents people affected by sickle cell disorder to improve their overall quality of life.
GenoMed4All @genomed4all
1K Followers 970 Following #H2020 project leveraging the power of #AI for #Genomics and Personalized Medicine in Haematological Diseases 🧬 Funded by the @EU_Commission 🇪🇺
NHS England @NHSEngland
515K Followers 2K Following We lead the NHS in England to deliver high quality services for all.
Sickle Cell Well Afri... @Sicklecellwell
227 Followers 297 Following Sickle Cell Well Africa Foundation (SCWAF) is an NGO based in Nigeria promoting the health of people living with Sickle Cell Disease #sicklecellaware
BSH - Haematology @BritSocHaem
16K Followers 461 Following #BSH is the largest UK organisation for #haematology professionals, covering all sides of the specialty & transforming the care our members provide since 1960
African Congress On S... @ACSCD_Conf
432 Followers 0 Following Official Page for the Foremost-Inclusive Conference on Sickle Cell Disease in Africa
Dr. SickleCell/ SCDA @DrSickleCell
1K Followers 93 Following We aim to change the narrative of Sickle Cell Disease in Africa. Together We Can #OvercomingSCD | Organizers of @acscd_conf
NeurologyGeneticsCyp @NeuroGeneticsCy
1K Followers 356 Following Cyprus Institute of Neurology and Genetics (CING), was established in 1990, as a bi-communal, non-profit, private, academic, medical center.
Academy for Sickle Ce... @ascatconference
820 Followers 499 Following ASCAT improves the lives of people with Sickle Cell Disease and Thalassaemia by providing an educational platform for our community.
The ITHANET Portal @ithanet_portal
290 Followers 141 Following ITHANET is a community portal dedicated to thalassaemia and other haemoglobinopathies
ARISE @ARISE_EUproject
178 Followers 33 Following ARISE is a project enhancing SCD research and care via staff exchange and is funded from the EU’s H2020 R&I programme under the MSCA GA No 824021
ERDERA @ERDERA_org
4K Followers 2K Following The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
Baba Inusa @PdbInusa
566 Followers 403 Following Sickle cell research, capacity building and teaching
UK Thalassaemia Socie... @teamukts
2K Followers 638 Following We support families & professionals, educate, campaign for change & fund research.
Share4Rare @Share4Rare
2K Followers 959 Following 💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
CVBF @consorziocvbf
120 Followers 206 Following CVBF mission is to perform innovative research initiatives in the European scenario to enhance pediatric research from drug discovery to clinical phases.
TIF @thalassaemiaTIF
7K Followers 6K Following A non-profit organization based in Cyprus advocating for the prevention & treatment of thalassaemia & other haemoglobin disorders & patients' rights worldwide.
ERN EuroBloodNet @ERNEuroBloodNet
2K Followers 404 Following ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases. Funded by the European Union.
Mariangela Pellegrini @MariangelaPell4
273 Followers 379 Following Educational & Patients Program manager for the @ERNEuroBloodNet, the European Reference Network on Rare Hematological Diseases
Carsten W. Lederer @LedererCarsten
35 Followers 38 Following Senior Scientist | Head of the Molecular Genetics Thalassaemia Department and Postgraduate Course Coordinator at the Cyprus Institute of Neurology & Genetics
Miguel Brito @MiguelBrit95941
2 Followers 29 Following
Coralea Stephanou @step_coral
22 Followers 49 Following Molecular biology, Medical genetics, Biocuration, Hemoglobinopathies
Petros Kountouris @pkountour
175 Followers 300 Following Bioinformatics, hemoglobinopathies, rare anemias. Cypriot
Fondazione Gianni Ben... @FondazioneBenzi
98 Followers 121 Following Fondazione Gianni Benzi is a not-for-profit organisation that promotes scientific research particularly with reference to vulnerable populationsTrends for United States
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