Bleeding Disorders Foundation of Florida

Webinar: Understanding Gene Therapy Research
2020-04-14 19:00 - 21:00 UTC | Seasons 52, 7700 W. Sand Lake Road, Orlando, FL, 32819, United States
Understanding Gene Therapy Research Webinar
(This webinar is replacing the dinner due to COVID-19)
Tuesday
April 14, 2020
Webinar will begin at 7:00pm
Presented by Laureen Temple, Senior Patient Education Liaison with Spark Therapeutics
This 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.
Please RSVP By April 10, 2020
Email: info@bleedingdisordersfl.org
Phone: 800-293-6527
Once you we have your RSVP, you will be sent the instructions on how to log in.
This webinar is sponsored by
Spark Therapeutics

BDFF Webinar: Emergency Preparation With a Bleeding Disorder
2020-04-21 19:00 - 20:00
So many families need preparation for a Hemophilia emergency! This presentation will assist families with helpful tips!
What to expect at ER
Prep for emergencies
Prep for travel
Advocating
Medical ID / medic alert
Picking an ER
Your Go Bag
Your Emergency Plan
When to go to the ER
What happens when you get to the ER
Communicating with Providers
Patient Rights
There will be time for questions and answers.
Presented by Bayer nurse, Linda Peacock
RSVP to info@bleedingdisordersfl.org and you will receive login information.
Brought to you by Bayer

Step Therapy Webinar
2020-04-29 14:00 - 15:00
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.
We 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.
Please RSVP to info@bleedingdisorderscoalitionofflorida.org for the log in information.
This is a great way for you to become an advocate for yourself and the bleeding disorders community of Florida!

Mental Health Matters: Maintaining Your Mental Health in Uncertain Times
2020-04-30 19:00 - 20:30
Maintaining Your Mental Health In Uncertain Times: Let’s Talk About It
In 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:
Common reactions to crisis
Our natural stress response and ways to minimize its negative impact
The distinction between situational stress and an anxiety condition
Creating a personalized stress management toolkit
Resources for mental health information and care
Speaker Bio:
Debbie 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.
Please RSVP to info@bleedingdisordersfl.org for login information.
Moderated by BDFF Outreach and Education Nurse, Leanne Buchanan, RN
