FHA E-Connect - Spring 2021

The e-newsletter for Lifeline, the official newsletter for the
Florida Hemophilia Association.
Unite Walk
Join us LIVE for the 11th Annual FHA Unite Walk on Sunday, November 7th! Now is the time to round up your family, friends and colleagues! We are super excited and looking forward to seeing you in person!! The walk is more than just a fundraising event, it brings together individuals affected by bleeding disorders, their families, friends, supporters, and a diverse range of others who want to enjoy an amazing day together while supporting a worthy cause. It attracts people of every age and background, from parents with infants in tow to grandparents and everything in between. Participate by creating a team, joining a team, or you can walk virtually to make a difference in the life of someone affected by a bleeding disorder. Our annual walk supports community programs for education, emotional support, and financial assistance!
Email Walk@floridahemophilia.org or call 305-235-0717 if you have any questions.
Check Out Our Website's New Look
Advocacy News
Advocacy Training
Rep. Shevrin Jone's Office
Meeting with Rep. Rick Roth
Senator Gary Farmer's Office
Advocacy Training
Meeting with Rep. Demi Busatta Cabrera
This year the Bleeding Disorders Coalition of Florida (BDCF) met with over 30 legislative offices on Wednesday, March 10th for our Annual State Advocacy Days. Our main initiative was to eliminate Co-pay accumulator programs in the state of Florida. Co-pay Accumulator Programs say that co-pay assistance does not count towards a patient’s deductible or OOP max. These programs harm people with bleeding disorders and other conditions who need co-pay assistance to afford their treatments. Without assistance, patients who can’t afford treatments may stop taking them or reduce the prescribed dosage. Unfortunately the Senate Bill S.B. 1078 sponsored by Sen. Jason Brodeur and the House Bill H.B.1111 sponsored by Rep. Demi Busatta Cabrera was never heard. We are grateful to Sen. Gary Farmer, Sen. Shevrin Jones and Rep. Vance Aloupis, Rep Anna Eskimani, Rep. Dottie Joseph, and Rep. Rick Roth for co-sponsoring this critical bill. You can help us continue work needed to stop these harmful programs by letting the Senators/Representatives in your district know how these Co-pay Accumulator Adjustors will personally affect you and your family! States where it's already passed did so with almost unanimous support are VA. W. VA, IL, AZ, GA, KY, OK, AR and Puerto Rico.
Daniel Carlin Scholarship Fund
Scholarships 2
 
FHA will be awarding several scholarships ($500-$1,500)
for the 2021-2022 academic year
In order to qualify for this scholarship, the applicant must be diagnosed with Hemophilia, Von Willebrand
Disease or related inherited bleeding disorder OR the parent of a child diagnosed with Hemophilia, Von Willebrand Disease or other related bleeding disorder. Applicants must be currently enrolled in good academic standing at OR accepted into an accredited college, university or trade school and pursuing a degree, certification or license.
 Applications must be received by May 21, 2021 in order to be considered for a scholarship. Applicants must
be Florida residents.
Upcoming Programs & Events
Dolphin Day Camp is Back!
Dolphin Day Camp will look a little different this year. Kids with a bleeding disorder will have the opportunity to learn about sea creatures and marine life virtually. Registrants will receive a goodie package before the program. The date is May 2.

Register online at floridahemophilia.org
________________________________________
(B)LEAD: Action League of Bleeders
We haven't been able to meet in person with these awesome teens and young adults this past year and a half, but they still had a great time meeting via Zoom!

Stay tuned for updates for this year's in-person retreat!
Check out the MARCH Bleeding Disorders Awareness Month Videos created by our awesome (B)LEADERS!
38th Annual Florida Bleeding Disorders Conference
The 38th Annual Florida Bleeding Disorders Conference will be Virtual. We're planning an awesome conference with great speakers/facilitators, interactive break-outs and a kids track.

SAVE THE DATES! July 23-25

Registration forms will be available SOON!
Personal Story Submission
laptop-family-girls.jpg

You or a loved one recently accomplished something to celebrate? Have you had a noteworthy experience navigating health insurance issues? Or do you merely have a story or advice for fellow bleeding disorders community members?

If so, we want to hear from you! We are looking to highlight community members in this space. Send us your stories of learning, overcoming, or even the frustration community members can experience.
Ad Sponsored by Genentech
Survey/Encuesta

Let your voice be heard!
Take the National HTC Patient Satisfaction Survey Today!
Hemophilia Treatment Centers (HTCs) across the United States are participating in the 2021 National HTC Patient Satisfaction Survey! If you, or someone you care for, had contact with an HTC in 2020, they want to hear from you! The survey only takes a few minutes of your time! Thank you for your valuable input!


¡Que su voz sea oído! ¡Complete la encuesta nacional de los Centros de Hemofilia para medir la satisfacción del paciente! 
¡Los Centros de Hemofilia en los Estados Unidos están participando en la encuesta nacional de 2021 de los Centros de Hemofilia para medir la satisfacción del paciente! Si usted o alguien que usted cuida ha tenido contacto con el Centro de Hemofilia en el año 2020, ellos quieren escuchar de usted. La encuesta solamente toma algunos minutos de su tiempo. ¡Gracias por su contribución!


Mission Statement
The Florida Hemophilia Association, Inc (FHA) is a Not-for-Profit organization that is dedicated to enhancing the quality of life in the bleeding disorders community by creating programs and services that provide education, emotional support and advocacy. We are contributing toward research to ultimately find a cure.
Staff and FHA Board of Directors
Debbi Adamkin
Executive Director
Red the Blood drop
Kim Madeiros
Development
John Novoa
President
Carlos Moreta
Steve Tejiram
Info
Florida Hemophilia Association


915 Middle River Drive, Suite 501
Ft Lauderdale, FL 33304
Phone: (305) 235-0717 | Contact us by E-mail: info@floridahemophilia.org
If you would like to advertise in future editions of FHA Connect or FHA's paper newsletter, Lifeline, please e-mail us at admin@floridahemophilia.org
Stay Connected