http___www.uhbh.org.ba_x_index.php_projekti_1.xml
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Hemophilia, von Willebrand disease, inherited platelet disorders, and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or else it does not work properly. The severity of a person’s bleeding disorder usually depends on the amount of clotting factor that is missing ornot functioning. People with hemophilia can experience uncontrolled bleeding that can result from a seemingly minor injury. Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can cause death. On April 17, 2018, the global bleeding disorders community and the World Federation of Hemophilia (WFH) came together to promote and encourage Sharing Knowledge and the role it plays in building a stronger community. “World Hemophilia Day is a wonderful opportunity for our community to make its presence felt,” explains Alain Weill, President of the WFH. “Our focus this year is on Sharing Knowledge because we are convinced thatknowledge and education are key drivers in stronger support for patients in our community. The WFH has a long history of collecting data and sharing knowledge. The WFH World Bleeding Disorders Registry (WBDR) is an example of how data collection will be used to advance the understanding and care of people with hemophilia worldwide. An accessible patient registry strengthens our capacity to identify, diagnose, treat, and care for people living with hemophilia and other rare inherited bleeding disorders,” said the press WFH communique. Like wise the post on Haemophilia Foundation Australia mentioned that the World Haemophilia Day was started in 1989 by the World Federation of Hemophilia (WFH) which chose to bring the community together on April 17 in honour of WFH founder Frank Schnabel’s birthday. April 17, 2018, will mark the 28th World Hemophilia Day! Landmarks and monuments in Australia and around the world supported World Haemophilia Day by changing their lighting red on April 17. Women and haemophilia For many years, people believed that only men could have symptoms of haemophilia and women were just carriers of the haemophilia gene. Here, Roche came in as a sponsor for World Hemophilia Day 2018 and join the World Federation of Hemophilia, and the entire community, in supporting women and girls affected by bleeding disorders. As knowledge about haemophilia increased, so did the understanding that haemophilia can occur in women too, and that women who are carriers of the haemophilia gene can also experience bleeding disorder symptoms that require treatment. As this aspect of haemophilia has only been recognised more recently, the precise number of women who have symptoms of haemophilia is currently not known. To learn more about this, we met with Dr Danielle Nance, a haematologist at the Arizona Bleeding Disorders Health and Wellness Center, Phoenix, USA. Dr Nance shared her own personal experience as a person living with haemophilia A, as the mother of a son with haemophilia A, and as a treating physician of people with bleeding disorders. In particular, she explains, this condition can be especially difficult for women due to the impact haemophilia has on reproductive bleeding, which can even affect fertility.
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Udruženje hemofiličara Bosne i Hercegovine (UHBH) je nevladina i neprofitna organizacija čiji rad je posvećen poboljšanju života osoba s hemofilijom i srodnim poremećajima krvarenja. Svoje aktivnosti provodimo u partnerstvu sa zdravstvenim radnicima i osobama s hemofilijom, lokalnim vlastima, Svjetskom federacijom hemofilije (WFH), Europskim hemofilija konzorcijem (EHC) i farmaceutskim kompanijama. Neki od tekućih programa i planiranih aktivnosti podrazumijevaju slijedeće: - - Osnivanje Vijeća za hemofiliju kao stalnog i stručnog tijela sa funkcijom optimiziranja pružanja zdravstvenih usluga, odnosno razvoja i formuliranja zdravstvene politike u pogledu tretmana hemofilije; - - Osnivanje nacionalnog Centra za tretman hemofilije kao centralne ustanove za dijagnosticiranje i tretman hemofilije i srodnih poremećaja krvarenja; - - Nastavak rada na stvaranju nacionalnog registra osoba sa hemofilijom; - - Organiziranje 2. Simpozija o hemofiliji u Bosni i Hercegovini; - - Organiziranje programa obilježavanja Svjetskog dana hemofilije; - - Podrška organiziranju humanitarnog koncerta u Jablanici; - - Održavanje redovne godišnje Skupštine Udruženja; - - Vizualni re-dizajn i unaprijeđenje funkcionalnosti Web stranice UHBH; - - Izdavanje biltena Hemophilia BH; i - - Učešće na konferenciji Europskog hemofilija konzorcija (EHC) i prisustvovanje drugim najvažnijim međunarodnim događajima u vezi sa tretmanom hemofilije.