BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Hemophilia Alliance - ECPv6.3.7//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Hemophilia Alliance
X-ORIGINAL-URL:https://hemoalliance.org
X-WR-CALDESC:Events for Hemophilia Alliance
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250904T130000
DTEND;TZID=America/New_York:20250904T140000
DTSTAMP:20260423T063546
CREATED:20250820T205915Z
LAST-MODIFIED:20250820T210018Z
UID:71357-1756990800-1756994400@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From BioMarin On Advancing Care with ROCTAVIAN® (valoctocogene roxaparvovec-rvox): Clinical Evidence\, Patient Perspective & Contract Opportunities
DESCRIPTION:Date: Thursday\, September 4th\, 2025\nTime: 1:00pm – 2:00pm ET \n  \n \n  \n  \n \nWEBINAR TITLE: \nAdvancing Care with ROCTAVIAN® (valoctocogene roxaparvovec-rvox): Clinical Evidence\, Patient Perspective & Contract Opportunities. \nOBJECTIVES: \n\nExplore updates to HEM Alliance member contract terms and the associated provider economics.\nReview the latest clinical data updates\, describing the long-term efficacy and safety of ROCTAVIAN.\nHear a firsthand experience from a patient who has received ROCTAVIAN\, offering valuable insights into the real-world impact of this therapy.\n\nAUDIENCE: \nAll HTC Staff. \nSPEAKERS: \n\nDawn St Amand\, Associate Director\, BioMarin Medical Science Liaison Hemophilia\nSophie Synder\, Director\, BioMarin US Value and Access\nAndrew W.\, ROCTAVIAN Patient Experience
URL:https://hemoalliance.org/alliance-events/a-webinar-from-biomarin-on-advancing-care-with-roctavian-valoctocogene-roxaparvovec-rvox-clinical-evidence-patient-perspective-contra/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250910T130000
DTEND;TZID=America/New_York:20250910T140000
DTSTAMP:20260423T063546
CREATED:20250827T014952Z
LAST-MODIFIED:20250827T020613Z
UID:71370-1757509200-1757512800@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From BD SUMHAC - Mental Health and Substance Use in the Bleeding Disorders Community
DESCRIPTION:Date: Wednesday\, September 10th\, 2025\nTime: 1:00pm – 2:00pm ET \n \n  \n  \n  \n  \n \nWEBINAR TITLE: \nMental Health and Substance Use in the Bleeding Disorders Community. \nDESCRIPTION: \nThe bleeding disorders community does not have the same access to inpatient and residential mental health and substance use treatment that the general population does. This webinar will talk about the barriers to access the BD community faces and the strategies and resources available to support HTC providers in addressing their patients’ mental health and substance use needs. It will also encourage HTC providers to ask their patients about mental health and substance use concerns early and often and advocate on their behalf when necessary.  \nOBJECTIVES: \n\nTo describe the mental health and substance use needs of the bleeding disorders community.\nTo outline the barriers to inpatient and residential mental health and substance use treatment the bleeding disorders community .\nTo provide data demonstrating that HTC provider advocacy on behalf of patients can overcome barriers to access.\nTo share tools and resources to support your patients’ behavioral health journey and assist in getting people with bleeding disorders access to mental health and substance use care. \n\nAUDIENCE: \nAll HTC Providers. \nSPEAKERS: \nKate Bazinsky\, MPH. \nKate Reinhalter Bazinsky has spent over two decades working in health policy and advocacy at the federal\, state\, and local levels. When her son was diagnosed with severe hemophilia A\, she became a passionate advocate for the bleeding disorders community. She co-founded and now serves as the Chair of the Bleeding Disorders Substance Use & Mental Health Access Coalition (BD SUMHAC). BD SUMHAC is a national\, multi-stakeholder coalition committed to ensuring equitable access to appropriate substance use and mental health treatment facilities for all individuals with bleeding disorders\, with a focus on inpatient and residential facilities. Kate has a Master of Public Health from Johns Hopkins University\, She lives in Wellesley\, MA with her husband and two children. \n \nLucy Ramirez\, LCSW. \nLucy Ramirez is a licensed clinical social worker for the Rush Hemophilia and Thrombophilia Treatment Center at the Rush University Medical Center in Chicago\, Illinois. In her current position\, Ms. Ramirez’s practice primarily involves counseling and educating individuals with bleeding disorders\, their caregivers and family members. She has served as facilitator and guest speaker for patient educational events sponsored by the National Bleeding Disorders Foundation\, the Bleeding Disorder Alliance of Illinois\, the VWD Connect Foundation and the Coalition for Hemophilia B. She serves as the current vice chair of the National Bleeding Disorders Foundation’s Social Work Working Group.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-bd-sumhac-mental-health-and-substance-use-in-the-bleeding-disorders-community/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250917T140000
DTEND;TZID=America/New_York:20250917T150000
DTSTAMP:20260423T063546
CREATED:20250908T140351Z
LAST-MODIFIED:20250912T145220Z
UID:71498-1758117600-1758121200@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Sanofi - Qfitlia Overview - Clinical\, Access\, and Distribution Dynamics
DESCRIPTION:Date: Wednesday\, September 17th\, 2025\nTime: 2:00pm – 3:00pm ET \n \n  \n  \n  \n \nWEBINAR TOPIC: \nQfitlia Overview: Clinical\, Access\, and Distribution Dynamics. \nOBJECTIVE: \nDr. Lynn Malec will review key elements of the Qfitlia efficacy and safety profile and Adam Gurry\, Sanofi Director of Access Strategy\, will provide insights on the Qfitlia access and distribution strategy. \nAUDIENCE: \nAll HTC Providers and Staff. \nSPEAKERS: \n\nLynn Malec\, MD. received her undergraduate and medical school degrees from the University of Wisconsin\, and went on to complete a residency in Internal Medicine and Pediatrics followed by a Pediatric Hematology/Oncology fellowship at the University of Pittsburgh/Children’s Hospital of Pittsburgh. Currently\, Dr. Malec is an Associate Investigator at the Versiti Blood Research Institute and Assistant Professor of Medicine and Pediatrics at the Medical College of Wisconsin. Dr. Malec serves as the Medical Director of the Comprehensive Center for Bleeding Disorders at Versiti. She is actively engaged in the care and research involving both adults and children with hemophilia and other bleeding and clotting disorders; her specific area of clinical research is focused on inhibitors in hemophilia and the impact of new factor products.\nAdam Gurry\, Director of Access Strategy at Sanofi has 19 years of experience on the commercial side of the business holding various roles of increasing responsibility. The past 5 years Adam has been focused on the Rare Blood therapeutic area responsible for the development of payer facing marketing materials and recently led the development of Qfitlia’s access strategy.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-sanofi-qfitlia-overview-clinical-access-and-distribution-dynamics/
CATEGORIES:Members Only,Webinar
END:VEVENT
END:VCALENDAR