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PRODID:-//Bleeding Disorders Foundation of Florida - ECPv6.15.20//NONSGML v1.0//EN
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X-WR-CALNAME:Bleeding Disorders Foundation of Florida
X-ORIGINAL-URL:https://bleedingdisordersfl.org
X-WR-CALDESC:Events for Bleeding Disorders Foundation of Florida
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TZID:UTC
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TZOFFSETFROM:+0000
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TZNAME:UTC
DTSTART:20190101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20200414T190000
DTEND;TZID=UTC:20200414T210000
DTSTAMP:20260422T131517
CREATED:20200309T213559Z
LAST-MODIFIED:20200324T210140Z
UID:7165-1586890800-1586898000@bleedingdisordersfl.org
SUMMARY:Webinar: Understanding Gene Therapy Research
DESCRIPTION:Understanding Gene Therapy Research Webinar\n(This webinar is replacing the dinner due to COVID-19) \nTuesday\nApril 14\, 2020\nWebinar will begin at 7:00pm \nPresented by Laureen Temple\, Senior Patient Education Liaison with Spark Therapeutics \nThis presentation is intended to walk you through the journey that started over 50 years ago with the beginnings of gene therapy research. We will walk through the basics of genetics and how that plays a role in hemophilia. With that knowledge\, we will look at how gene therapy is meant to work and discuss both the potential for and the challenges of investigational gene therapy research in hemophilia today. \nPlease RSVP By April 10\, 2020\nEmail: info@bleedingdisordersfl.org\nPhone: 800-293-6527 \nOnce you we have your RSVP\, you will be sent the instructions on how to log in. \nThis webinar is sponsored by\nSpark Therapeutics
URL:https://bleedingdisordersfl.org/event/program-understanding-gene-therapy-research/
LOCATION:Seasons 52\, 7700 W. Sand Lake Road\, Orlando\, FL\, 32819\, United States
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200421T190000
DTEND;TZID=UTC:20200421T200000
DTSTAMP:20260422T131517
CREATED:20200403T002136Z
LAST-MODIFIED:20200403T221939Z
UID:7239-1587495600-1587499200@bleedingdisordersfl.org
SUMMARY:BDFF Webinar: Emergency Preparation With a Bleeding Disorder
DESCRIPTION:So many families need preparation for a Hemophilia emergency! This presentation will assist families with helpful tips! \nWhat to expect at ER\nPrep for emergencies\nPrep for travel\nAdvocating\nMedical ID / medic alert\nPicking an ER\nYour Go Bag\nYour Emergency Plan\nWhen to go to the ER\nWhat happens when you get to the ER\nCommunicating with Providers\nPatient Rights \nThere will be time for questions and answers. \nPresented by Bayer nurse\, Linda Peacock \nRSVP to info@bleedingdisordersfl.org and you will receive login information. \nBrought to you by Bayer
URL:https://bleedingdisordersfl.org/event/hfgf-webinar-emergency-preparation-with-a-bleeding-disorder/
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200429T140000
DTEND;TZID=UTC:20200429T150000
DTSTAMP:20260422T131517
CREATED:20200318T224910Z
LAST-MODIFIED:20200318T224910Z
UID:7202-1588168800-1588172400@bleedingdisordersfl.org
SUMMARY:Step Therapy Webinar
DESCRIPTION:At this webinar\, we will discuss what step therapy is and how it affects the bleeding disorders community. Mark Hobraczk with the Hemophilia Federation of America will lead this discussion and answer questions. \nWe will also have a patient in the webinar with us to tell her story and give tips on how to push this issue forward for the 2021 Florida legislative session. \nPlease RSVP to info@bleedingdisorderscoalitionofflorida.org for the log in information. \nThis is a great way for you to become an advocate for yourself and the bleeding disorders community of Florida!
URL:https://bleedingdisordersfl.org/event/step-therapy-webinar/
CATEGORIES:Programs,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200430T190000
DTEND;TZID=UTC:20200430T203000
DTSTAMP:20260422T131517
CREATED:20200421T000125Z
LAST-MODIFIED:20200421T000125Z
UID:7315-1588273200-1588278600@bleedingdisordersfl.org
SUMMARY:Mental Health Matters: Maintaining Your Mental Health in Uncertain Times
DESCRIPTION:Maintaining Your Mental Health In Uncertain Times: Let’s Talk About It \nIn response to the anxiety generated by the coronavirus outbreak\, Mental Health Matters Too has created a practical webinar to address the increased stress level of members in the bleeding disorders community. The webinar will cover: \nCommon reactions to crisis \nOur natural stress response and ways to minimize its negative impact \nThe distinction between situational stress and an anxiety condition \nCreating a personalized stress management toolkit \nResources for mental health information and care \nSpeaker Bio:\nDebbie de la Riva\, LPC has been an active member of the bleeding disorders community since the birth of her son with severe hemophilia 25 years ago. She served as the Executive Director of the Lone Star Chapter of the National Hemophilia Foundation\, was a co-chair of a NHF Annual Meeting\, and received a Ryan White Award for Advocacy Excellence. In 2018\, Ms. de la Riva founded Mental Health Matters Too as a way of combining her degree as a licensed professional counselor with her passion of helping community members struggling with mental health challenges. The mission of MHMT is to normalize the discussion of mental health issues within the bleeding disorders community\, provide information on various mental health concepts and help community members locate resources for mental health care and support. \nPlease RSVP to info@bleedingdisordersfl.org for login information. \nModerated by BDFF Outreach and Education Nurse\, Leanne Buchanan\, RN
URL:https://bleedingdisordersfl.org/event/mental-health-matters-maintaining-your-mental-health-in-uncertain-times/
CATEGORIES:Programs,Webinar
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