Click the image below for the full issue of this newsletter.

Newsletter_Spring 2020

At this webinar, we will discus what step therapy is and how it affects the bleeding disorders community. Mark Hobraczk with the Hemophilia Federation of American 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 [email protected] 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!

A Message from the University of Miami Hemophilia Treatment Center:

The University of Miami HTC team will be accessible to our families during the Coronavirus pandemic.  However, there may be delays in responses due to team members working remotely, on varying schedules.

For phone calls: 305 – 243 – 0834 remains the primary contact number.  For true emergencies, please call 911.

For urgent matters and after-hours:

PEDIATRIC PATIENTS:
Call 305 – 585 – 5400 and ask to speak with the Pediatric Hematologist On-Call. 

ADULT PATIENTS:
Call 305 – 354 – 1000 and ask to speak with the Adult Hematologist On-Call.

For non-urgent matters, please call the main number at 305 – 243 – 0834 and leave a message. Please be advised that responses may be delayed.

To reach a team member directly, below is a directory of email addresses:

·        Dr. Joanna Davis (Pediatric Hematologist): [email protected]

·        Dr. Fernando Corrales-Medina (Pediatric Hematologist): [email protected]

·        Dr. Thomas Harrington (Adult Hematologist): [email protected]

·        Krysten Sargenton, APRN (Pediatric Nurse Coordinator/On behalf of Maya Bloomberg, APRN, Adult Nurse Coordinator): [email protected]

·        Kelli Fraga, PT, DPT (Pediatric/Adult Physical Therapist): [email protected]

·        Annalise Guerra, MSW (Pediatric/Adult Clinical Social Worker): [email protected]

·        Magaly Gonzalez (Clinical 340B Program Coordinator): [email protected]

The HTC team appreciates any suggestions from our families, as you work within the limitations necessary to prevent the spread of the COVID-19 virus, to improve our communications with you all.

Additional resources

·               World Health Organization COVID-19 Information

·               Centers for Disease Control and Prevention COVID-19 Information

·               Florida Department of Health COVID-19 Information

·               U.S. Department of State Travel Advisories

·               Centers for Disease Control and Prevention Travel Health Notices

The Florida Department of Health has activated a hotline for people in Florida who have questions about COVID-19. The call center is available 24 hours a day, seven days a week and can be reached at 866-779-6121 or [email protected].

It’s Valentine’s Week and BDFF is proposing… that you register for the 2020 Gator Clot Trot 5K and Fun Walk!  Use this sweet week to sign up and invite all of your dearest ones to do so as well.

The 2020 Gator Clot Trot is on March 14th at Depot Park.  Onsite registration begins at 11:30 AM and the 5K takes off at 12:30 PM.  Walkers leave after all 5Kers are done. 

Don’t forget, BDFF loves you and 89% of all fundraising dollars support the bleeding disorders community by:

Sending BDFF kids to Camp Spirit
Funding BDFF students with scholarships
Helping BDFF patient when they need emergency financial assistance and other items like Comfy Caps and MedicAlert memberships
Providing educational programs for BDFF families

Thank you for being an BDFF Valentine this week and always!

CLICK HERE TO REGISTER NOW!

Please click the image below to read the Winter Newsletter from St. Joseph’s Children’s Hospital and HTC.

FOR IMMEDIATE RELEASE

December 19, 2019

Contact: Leah Nash

[email protected]

407.629.0000 X103

Hemophilia Foundation Presents Aladdin at Dr. Phillips Center

Bleeding Disorders Foundation of Florida fundraiser supports bleeding disorders community

The Bleeding Disorders Foundation of Florida (BDFF) is pleased to present its 18^th Annual Evening on Broadway, February 1, 2020, featuring Disney’s Aladdin live on stage at the Dr. Phillips Center for the Performing Arts in downtown Orlando.

Tickets to this special presentation include a pre-reception with heavy hors d’oeuvres, a silent auction and raffle, as well as premiere seating for $150. The reception begins at 6 p.m., followed by the performance.

The 18^th Annual Evening on Broadway supports the Florida bleeding disorders community through family support weekends, health educational programs, financial emergency assistance, student scholarships and sending BDFF patients to Camp Spirit, a medically supervised summer camp. Eighty-nine percent of money raised through BDFF fundraisers go toward the bleeding disorders community in Florida.

“The cost of treatment varies for those who have hemophilia and other bleeding disorders, however, costs are typically extraordinary due to the price of medication, as well as the number of times it must be administered,” says Fran Haynes, Executive Director of the BDFF, which has been serving the bleeding disorders community since 1996. “Our patients need us, and we are here to help them.”

Tickets for the evening are available for purchase at hemophiliaflorida.org/fundraising/evening-on-broadway. BDFF is also seeking silent auction and raffle gifts. If your company would like to donate, please contact [email protected], or call 407.629.0000.

Please visit hemophiliaflorida.org for more information about BDFF, hemophilia and other bleeding disorders, and/or BDFF fundraising walks. Personal chronicles can found at hemophiliaflorida.org/what-we-do/voices-of-hfgf.

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Note to media: If you’d like more information about the Bleeding Disorders Foundation of Florida, or to schedule an interview with BDFF staff or members of the bleeding disorders community, please contact Leah Nash at [email protected] or 407.629.0000 X103.