HaemophAmicus
LightNews LightNews
banner
haemophamicus.bsky.social
HaemophAmicus
@haemophamicus.bsky.social
27 followers 60 following 31 posts
Haemophilia and Allied Disorders
Slovenia/Europe

https://haemophamicus.eu
info@haemophamicus.eu
Posts Replies Media Videos
haemophamicus.bsky.social
Pripravili smo kratek pregled dogajanja v hemofiliji v letu 2025. Iz optimističnega leta 2025, prehajamo v motivacijsko 2026.

Hvala vsem, ki nam sledite in nas podpirate. Srečno!

haemophamicus.eu/blog/hemofil...

#hemofilija #motnjestrjevanjakrvi #informiranje #ozaveščanje #motivacija
Hemofilija v letu 2025
Danes o hemofiliji ne govorimo več le skozi prizmo diagnoze, temveč skozi zgodbe o neomejenih možnostih. Zahvaljujoč prelomnim terapijam, strah pred nepredvidenimi krvavitvami nadomešča zaupanje v las...
haemophamicus.eu
December 30, 2025 at 9:42 PM
haemophamicus.bsky.social
May this year's white #Christmas be full of warmth and joy, but at the same time, may it pass under the sign of caution, so that the festive joys remain a beautiful and safe experience for #hemophilia patients.
#Christmas2025 #hemophilialife 🩸
December 24, 2025 at 4:05 PM
haemophamicus.bsky.social
Soustvarjanje prihodnosti slovenskega zdravstva: Pacient kot enakovreden partner, ne le kot prejemnik storitev
haemophamicus.eu/povzetki-dog...

www.farmaforum.si/app/uploads/...

#FarmaForum #ZOPS #ZvezaOrganizacijPacientovSlovenije #RocheSlovenija
December 17, 2025 at 2:13 PM
haemophamicus.bsky.social
Hemofiliji in motivaciji se bomo posvetili v prihajajočem letu.

Za uvod pa tudi že nekaj letos:
haemophamicus.eu/blog/%C5%BEi...

#hemofilija #motnjestrjevanjakrvi #motivacija #hemophilia #bleedingdisorders #motivation #HaemophAmicus @ehc-news.bsky.social @eurordis.bsky.social
Življenje s hemofilijo in motivacija: Moč notranjega kompasa
Hemofilija nas uči discipline, motivacija pa nas poganja, da prihodnost gradimo kot neustavljivi arhitekti lastne odpornosti, ne kot žrtve okoliščin.
haemophamicus.eu
December 16, 2025 at 2:10 PM
haemophamicus.bsky.social
Celostno obvladovanje bolečine pri osebah z motnjami strjevanja krvi, webinar #wfhemophilia
#hemophilia #bleedingdisorders #painmanagement

www.facebook.com/share/p/1SYz...
December 13, 2025 at 6:52 PM
haemophamicus.bsky.social
#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
November 15, 2025 at 5:50 PM
haemophamicus.bsky.social
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.
October 5, 2025 at 1:07 PM
haemophamicus.bsky.social
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
July 11, 2025 at 12:41 PM
haemophamicus.bsky.social
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
June 4, 2025 at 7:08 PM
Reposted by HaemophAmicus
haemophamicus.bsky.social
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 2025: Kolesarjenje kot simbol moči in solidarnosti tudi za osebe s hemofilijo
Kolesarjenje motivira, hemofilik profitira – nabirajmo kolesarske kilometre skupaj za boljšo prihodnost našega psihofizičnega zdravja!
haemophamicus.eu
June 3, 2025 at 8:59 AM
haemophamicus.bsky.social
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 2025: Kolesarjenje kot simbol moči in solidarnosti tudi za osebe s hemofilijo
Kolesarjenje motivira, hemofilik profitira – nabirajmo kolesarske kilometre skupaj za boljšo prihodnost našega psihofizičnega zdravja!
haemophamicus.eu
June 3, 2025 at 8:59 AM
haemophamicus.bsky.social
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
May 30, 2025 at 7:31 PM
Reposted by HaemophAmicus
eahad.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
April 24, 2025 at 3:27 PM
Reposted by HaemophAmicus
haemnet.bsky.social
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
April 23, 2025 at 6:29 AM
Reposted by HaemophAmicus
haemnet.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
April 24, 2025 at 9:19 AM
haemophamicus.bsky.social
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
April 23, 2025 at 6:08 AM
haemophamicus.bsky.social
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
April 17, 2025 at 7:16 PM
Reposted by HaemophAmicus
haemophamicus.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
Aktivna hemofilija, #WHD2025
YouTube video by HaemophAmicus EU
youtu.be
April 16, 2025 at 8:32 PM
Reposted by HaemophAmicus
isth.org
🌍 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
April 17, 2025 at 3:15 AM
Reposted by HaemophAmicus
isth.org
🔬 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
April 17, 2025 at 3:29 AM
Reposted by HaemophAmicus
haemnet.bsky.social
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
April 17, 2025 at 7:10 AM
Reposted by HaemophAmicus
profmakris.bsky.social
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.
April 17, 2025 at 7:59 AM
haemophamicus.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
Aktivna hemofilija, #WHD2025
YouTube video by HaemophAmicus EU
youtu.be
April 16, 2025 at 8:32 PM
haemophamicus.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
April 15, 2025 at 6:28 PM
Reposted by HaemophAmicus
profmakris.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
April 10, 2025 at 8:15 PM