@haemophamicus.bsky.social
Haemophilia and Allied Disorders Slovenia/Europe https://haemophamicus.eu info@haemophamicus.eu
#ZvezaOrganizacijPacientovSlovenije in farmacevtska družba #Roche sta nas gostili na izobraževalni delavnici »Pacient kot enakovreden partner, ne le kot prejemnik storitev«.
Moč pacientov je v znanju in izkušnjah!
#partnerstvo #učenje #izobraževanje #znanje #informiranje #ZOPS #RocheSlovenija
As a #LiberateLife Ambassador, I am fighting for a world in the bleeding disorder community, where #haemophilia is not going to dictate a destiny, but a challenge that can be overcome.
05.10.2025 13:07 — 👍 0 🔁 0 💬 0 📌 0
Tokrat se udeležujem Vrha WFH (Svetovne federacije za hemofilijo) o globalni politiki in dostopnosti (GPAS) 2025.
Več na: haemophamicus.eu/povzetki-dog...
#GPAS2025 #hemofilija #motnjestrjevanjakrvi #dostopnost #enakopravnost #oskrba #zdravljenje @who.int #hemophilia #bleedingdisorders
Uspešna okrogla miza je za nami: “Kaj bi moral vedeti o zdravilih, pa ne vem“. Razpravljali smo o ključnih vprašanjih glede uporabe zdravil, pomenu klinične farmacije ter izzivih, s katerimi se soočajo tako strokovnjaki kot pacienti.
Združenje kliničnih farmacevtov 🇸🇮 & #ZOPS #zdravila #nasveti
Svetovni dan kolesarjenja je danes, 3. junija 🥰
Zakaj ga ne bi povezali tudi s hemofilijo in sorodnimi motnjami strjevanja krvi?
haemophamicus.eu/blog/svetovn...
#hemofilija #motnjestrjevanjakrvi #motivacija #spodbuda #rekreacija #redkebolezni #hemophilia #bleedingdisorders #WorldBicycleDay2025
Svetovni dan kolesarjenja je danes, 3. junija 🥰
Zakaj ga ne bi povezali tudi s hemofilijo in sorodnimi motnjami strjevanja krvi?
haemophamicus.eu/blog/svetovn...
#hemofilija #motnjestrjevanjakrvi #motivacija #spodbuda #rekreacija #redkebolezni #hemophilia #bleedingdisorders #WorldBicycleDay2025
More needs to be done in advocacy for #hemophilia and allied #bleedingdisorders, and in encouraging and motivating patients.
#hemophiliaawareness #hemophilialife #equity #equality #motivation #advocacy #Allinvolved @ehc-news.bsky.social
🎥 Relive the highlights of #EAHAD2025 Congress on the #EAHAD Academy: academy.eahad.org/eahad/#!*men...
🔓 Free access to the Virtual Round-Up
🔒 Want the full experience? EAHAD members get full access. Not a member? Join now & unlock it all 👉 lnkd.in/eDF5Mmys
Haemnet's Director of Research, Dr Kate Khair, is at the WFH Comprehensive Care Summit in Dubai this week, looking forward to a packed programme, and hearing and sharing insights on new developments in bleeding disorders care. Hope to see you there! #wfhCCS
#HemeSky #MedSky
@katekhair.bsky.social
Today at the WFH Comprehensive Care Summit, Haemnet's Dr Kate Khair joins Manuel Carcao and Stacy Croteau to discuss management of previously untreated haemophilia patients in the era of non-factor replacement therapy. Session starts 11.30am local time. See you there? #wfhCCS #HemeSky #MedSky
24.04.2025 09:19 — 👍 2 🔁 1 💬 0 📌 0
Pravkar se je pričel Vrh celostne oskrbe (CCS), globalni dogodek v organizaciji Svetovne federacije za hemofilijo (WFH). Letos poteka v Dubaju, Združeni Arabski Emirati. Udeležuje pa se ga čez 800 delegatov iz 90-ih drźav sveta. #wfhCCS #hemophilia #Dubai
23.04.2025 06:08 — 👍 1 🔁 0 💬 0 📌 0
Pester #SvetovniDanHemofilije je za nami in pomembno je, da smo ga predstavili širši javnosti oz. tistim, ki naših redkih bolezni še niso spoznali:
haemophamicus.eu/svetovni-dan...
#hemofilija #WHD2025 #hemophilia #WorldHemophiliaDay #LightItUpRed #WeBleedToo @ehc-news.bsky.social
Living with #hemophilia is not easy. But we can make it easier by encouraging, helping, and motivating each other.
Good luck, dear global hemophilia community!
youtu.be/Kwk3jquxJQY
#WHD2025 #WorldHemophiliaDay #LightItUpRed #WeBleedToo @ehc-news.bsky.social @eahad.bsky.social
🌍 It’s World Hemophilia Day! Today we’re celebrating the leaders & advocates making a difference in the bleeding disorders community, like Dr. Munira Borhany.
✨ Read more about her journey to leadership in the ISTH and hematology: bit.ly/44syyTh #WHD2025 #ISTH2025 #WeBleedToo
🔬 Fueling the future of hemophilia research! “Every story of each patient was unique and inspiring,” says Iris van Moort. On World Hemophilia Day, we’re highlighting the next generation of scientific leaders like Iris.
📖 Read more about her journey: www.isth.org/news/news.asp?id=673242
We support the World Federation for Hemophilia's call for equity in access to diagnosis and care for women & girls with bleeding disorders. Read our World Hemophilia Day blog about the mother of a girl with mild haemophilia: loom.ly/XYrT7Mc
#WeBleedToo #WHD2025
#MedSky #BloodSky #HemeSky
Today is #WorldHemophiliaDay and this year's theme is that women and girls bleed too. Despite the development of brilliant treatments to treat severe #hemophilia primarily in men, the diagnosis and treatment of women have not received as much attention.
17.04.2025 07:59 — 👍 8 🔁 2 💬 0 📌 0
Living with #hemophilia is not easy. But we can make it easier by encouraging, helping, and motivating each other.
Good luck, dear global hemophilia community!
youtu.be/Kwk3jquxJQY
#WHD2025 #WorldHemophiliaDay #LightItUpRed #WeBleedToo @ehc-news.bsky.social @eahad.bsky.social
Hemofilija je redka bolezen, ozaveščanje o njej mora biti zato pogosto.
Pridruži se 17. aprila: haemophamicus.eu/svetovni-dan...
#hemofilija #motnjestrjevanjakrvi #hemophilia #bleedingdisorders #WorldHemophiliaDay #WHD2025 #HaemophiliaAwareness #LightItUpRed #SupportHaemophilia @ehc-news.bsky.social
Thank you for the copies of the paper on the UK Infected Blood Inquiry that was published in @BloodJournal. It is interesting to see the section on lessons learned. Despite the @bloodinquiry, the UK continues to use cryo and FFP without viral inactivation. #hemophilia
10.04.2025 20:15 — 👍 4 🔁 2 💬 0 📌 0
Join Cedric Hermans and @profmakris.bsky.social in this E-learning Insight session as they share practical strategies and key considerations to help you navigate the world of scientific publishing. Learn how to write with purpose and make your research stand out.📺 academy.eahad.org/eahad/2023/e...
10.04.2025 12:14 — 👍 4 🔁 3 💬 0 📌 0
Mama in otrok s hemofilijo - naveza, ki navdihuje življenjsko pot osebe z motnjo strjevanja krvi: haemophamicus.eu/svetovni-dan...
Renato, na fotografiji z mamo Ireno, daljnega leta 1978.
#hemofilija #motnjestrjevanjakrvi #redkebolezni #WHD2025 #hemophilia @ehc-news.bsky.social
April je tu. Mesec v katerem obeležujemo svetovni dan hemofilije, 17. aprila.
Poseben poudarek bo tokrat na ženskih motnjah strjevanja krvi.
haemophamicus.eu/svetovni-dan...
#hemofilija #ozaveščanje #WHD2025 #AllInRed #hemophilia #bleedingdisorders @ehc-news.bsky.social @eahad.bsky.social
Mi smo se že zagnali. Kaj pa vi?
#PolniZagona kolesarimo v službo je nacionalna pobuda za spodbujanje kolesarjenja.
Mi ji dodajamo še ozaveščanje o hemofiliji in skrb za zdravje sklepov.
#kolesarjenje #gibanje #hemophilia #jointhealth #Slovenia
@ehc-news.bsky.social (EHC) s pozivom deležnikom glede zavezanosti izboljšavam pri možnostih zdravljenja hemofilije in drugih motnjah strjevanja krvi v prihodnosti.
Več na: haemophamicus.eu/blog/zaskrbl...
#hemofilija #produkti #zdravljenje #novosti #hemophilia #bleedingdisorders #HaemophAmicus
🔬 Dive into the latest breakthroughs in Acquired Haemophilia A with EAHAD Academy’s newest e-learning module! Join Rebecca Kruse-Jarres as she unpacks current best practices and what’s next in the field.
🎥 Watch now and enhance your expertise: academy.eahad.org/eahad/2025/e...
The EAHAD Psychosocial Professionals Committee is pleased to share two new publications addressing the psychosocial aspects of innovative therapies in #haemophilia. 📥 Access them now and stay informed on the latest developments in psychosocial care: www.eahad.org/publications/
04.03.2025 14:05 — 👍 1 🔁 1 💬 0 📌 0
Don't miss this exclusive interview with EAHAD CEO Angelos Athanasopoulos for PharmaStar, where he shares insights into the association's pivotal role in advancing research, and envisioning the future for the haemophilia community. Watch the full interview: youtu.be/GElzmjO35u0
05.03.2025 09:15 — 👍 1 🔁 1 💬 0 📌 0On 7 March, @ema.europa.eu will also host a public webinar to provide a live demonstration on how to use all the features of this new EU interactive map on #ClinicalTrials. More info here 👉 tinyurl.com/munanttj
05.03.2025 11:47 — 👍 2 🔁 2 💬 0 📌 0
"Objemi za redke bolezni" je iskrena pobuda, namenjena ozaveščanju in podpori posameznikom in družinam, ki jih prizadenejo redke bolezni.
www.zveza-pacientov.si/novice/objem...
#ObjemiZaRedke #HugForRare #RareDiseaseDay2025
#RedkeBolezni
