{"id":47435,"date":"2022-08-18T14:02:14","date_gmt":"2022-08-18T12:02:14","guid":{"rendered":"https:\/\/pharma-trend.com\/en\/in-partnership-with-global-genes-bleeding-disorders-alliance-illinois-hosts-inaugural-ultra-rare-bleeding-disorder-meet-up-conference\/"},"modified":"2022-08-18T14:02:14","modified_gmt":"2022-08-18T12:02:14","slug":"in-partnership-with-global-genes-bleeding-disorders-alliance-illinois-hosts-inaugural-ultra-rare-bleeding-disorder-meet-up-conference","status":"publish","type":"post","link":"https:\/\/pharma-trend.com\/en\/in-partnership-with-global-genes-bleeding-disorders-alliance-illinois-hosts-inaugural-ultra-rare-bleeding-disorder-meet-up-conference\/","title":{"rendered":"In Partnership with Global Genes, Bleeding Disorders Alliance Illinois Hosts Inaugural Ultra-RARE Bleeding Disorder Meet-Up Conference"},"content":{"rendered":"
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\nConference Aims to Broaden Education, Awareness and Community for Ultra-Rare Bleeding Disorders<\/i>\n<\/p>\n

ALISO VIEJO, Calif.–(BUSINESS WIRE)–Global Genes<\/a>, a leading patient advocacy organization, and Bleeding Disorders Alliance Illinois (BDAI)<\/a>, a non-profit focused on improving the quality of life for those with genetic bleeding disorders, today announced the inaugural Ultra-RARE Bleeding Disorder Meet-Up Conference<\/a>. The three-day event aims to gather individuals and caregivers living with ultra-rare bleeding disorders to build community and network with peers. The in-person conference takes place from September 9 – 11, 2022, at the Chicago Marriott Southwest at Burr Ridge. Participation is not restricted to those located in Illinois.\n<\/p>\n

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\nWhereas inherited common bleeding disorders like hemophilia are often identified at birth, ultra-rare bleeding disorders can take many years to properly diagnosis. These conditions include deficiencies of coagulation factors fibrinogen, factor (F)II, FV, combined FV and FVIII, FVII, FX, FXI, FXIII, and congenital deficiency of vitamin K-dependent factors (VKCFDs). The incidence of these conditions is between 1 in 500,000 for FVII deficiency to 1 in 2 to 3 million for prothrombin and FXIII deficiencies. For comparison, hemophilia generally occurs in 1 in 5,000 male births.\n<\/p>\n

\n\u201cWe have been a proud leader and advocate for individuals and families of those with rare bleeding disorders, providing vital support since 1949,\u201d said Bob Robinson, Executive Director of Bleeding Disorders Alliance Illinois. \u201cThe Ultra-RARE Bleeding Disorder Meet-Up Conference is the first time there has been a gathering in the United States for this particular group of bleeding disorders, and it\u2019s essential we provide our community with the empowerment and resources to speak with media providers, make connections and build a support system. By sharing collective knowledge, we can help ensure those with these bleeding disorders can understand their conditions and live healthy, active, and fulfilling lives.\u201d\n<\/p>\n

\nOver three days, participants will hear from leading experts, including:\n<\/p>\n