The official electronic newsletter for the Florida Hemophilia Association | |
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Dear friends,
This has been an amazing year celebrating Florida Hemophilia Association's 40-year anniversary with all of you so far! I’ve had the honor of meeting so many of you, hearing all of your experiences, stories of the good and the difficult, and learning the unique challenges of the past and present within the bleeding disorders community.
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In my first year with the organization, I’ve seen firsthand how resilient and supportive this community is, witnessing how each of you contribute something so incredible to ensure the best quality of life for our community. You are amazing!
We invite you to continue to join us at our events this anniversary year to experience the future ahead for this strong community, especially while visiting with past friends and new friends alike.
At every Florida Hemophilia Association event this year, we will honor and keep close the 40 years of grassroots efforts that helped build our community so strongly.
These events are important celebrations during this anniversary year in which we move forward carrying new knowledge, while knowing we will be learning all the time and incorporating even more.
For the next 40 years, we invite you to join us in helping tackle barriers the community faces, understanding new concepts around treatments of the future, and working toward innovative ways to serve the bleeding disorders community.
Join us at the Conferencia Latina, September 29 – October 1, in Fort Lauderdale during Hispanic Heritage Month! For our Spanish-speaking community members, this conference presents interactive educational sessions and breakouts in Spanish. Celebrate our 40th with the live sounds of Marlow Rosado & his Orchestra!
Walk with us at our 40th Anniversary celebration Unite Walk on October 14th, our official 40th anniversary date. REGISTER ASAP for this major Walk event for all and set up your fundraising page to help to help launch our 40 days for 40 years Unite Walk fundraising campaign!
Stay tuned for more information on this fun 40 Days for 40 Years Walk campaign.
Your Florida Hemophilia Association is dedicated to the next 40 years on a strong path forward in our mission to enhance the quality of life for our bleeding disorders community with programs that provide education, emotional support and advocacy. It is just the beginning!
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Pepper Adair
Executive Director
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We Got into the Groove at the 40th Annual Florida Bleeding Disorders Conference! ⚡ | |
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Back in 1983, the Florida Hemophilia Association was established, but history was only made with you all, through the four decades of dedication from the families and friends of the bleeding disorders community. The 40th Annual Florida Bleeding Disorders Conference took place at the West Palm Beach Marriott from July 24 to 26, honoring that history in style-- 80s style.
The 80s theme provided a fun and colorful backdrop to this weekend of learning and sharing. Patients and families from all over the state met to tell their stories and learn the latest updates in the field of bleeding disorders. Knowledge is the key to taking greater initiative over your life, and we saw so many community members learning something new to take home with them and apply to their lives in the face of the unique challenges brought by a bleeding disorder.
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Community members got to attend informative sessions tailored to them and their life experiences, whether they were a brand new family of a newly diagnosed child or someone with years of experience. Some attendees participated in a special and innovative session featuring exciting discussions on health equity, with groups collaborating on solutions to current barriers to healthcare and access of safe and affordable care for all!
For Saturday night, attendees dressed in their best 80s outfits! There were side ponytails, neon color clothes, and lace gloves at the 40th Annual FBDC this year, as community members showed out in their best of the era. Some hilarious moments ensued as families participated together in a Minute To Win It-style competition! Plenty of families even went home with some amazing raffle prize bundles! Sunday brought perfect weather, as we closed out the conference with a relaxing pool party before everyone made their way back home.
We are thankful for our sponsors, without whom an event of this magnitude would not be possible. Their support is always instrumental in making sure our community members and their families have a welcoming and encouraging space to share and grow as collectors of knowledge. We also want to thank our 2023 FBDC Board Lead Crystal Hendrix and all of our amazing volunteers for helping us make this conference one of our best yet!
40 years is such a landmark in our organization, and we couldn't be more proud to celebrate this anniversary with you all. See you all at next year's FBDC!
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The 40th Annual Florida Bleeding Disorders Conference was made possible with the support of our sponsors:
Gold Sponsor
Takeda
Premier Exhibitor
Sanofi
2023 Conference Exhibitors
Accredo, Bayer, BioMarin, CSL Behring,
Genentech, HEMA Biologics, InfuCare Rx,
Novo Nordisk, Octapharma, Pfizer
Community Education Partner
Hemophilia Federation of America
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Thank You for Celebrating
World Hemophilia Day With Us 🩸
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Thank you to everyone who joined us at our World Hemophilia Day Celebration on April 29 at the Renaissance Fort Lauderdale Hotel & Marina!
This was a beautiful evening with everyone coming together to honor this year's theme: Access for All: Prevention of bleeds as the global standard of care. Everyone in our bleeding disorders community comes from different walks of life and different experiences, and yet we all united as one family to raise awareness for a brighter future for people with bleeding disorders.
We wrote letters to families in other countries where there may be greater challenges to access of comprehensive care; the Save One Life foundation is sending these letters to families around the world, spreading the word of our support while working to improve access for all.
Everyone also made some stylish friendship bracelets while discussing the positive aspects of living with a bleeding disorder, such as having found such a tight knit community and support system in each other, making new friends, and getting the opportunity to learn more alongside others. Thank you to Sanofi for sponsoring this beautiful event!
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40 Years of Florida Hemophilia Association's Dedication, Support, and Unity! 🎆 | |
Back in 1983, the Florida Hemophilia Association was established, and it is with your help that we have been able to grow into the key support system it is today. Since its start, Florida Hemophilia Association has dedicated itself and worked diligently to improve the quality-of-life of thousands of people affected by bleeding disorders throughout the State of Florida and beyond. | |
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This year will mark 40 years of Florida Hemophilia Association being a vital educational resource, network of support, and advocate for the bleeding disorders community of Florida. It is a great honor to serve you.
Thank you all for your support!
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La Conferencia Latina es nuestro evento anual presentado completamente en español. Sucediendo en medio del Mes de la Herencia Hispana, este evento une a los miembros de nuestra comunidad habla hispano para un fin de semana de oportunidades para aprender la información más reciente en el mundo de los trastornos hemorrágicos, compartir sus experiencias, hacer nuevos amigos, reunirse con amigos del pasado y pasar un tiempo buenísimo!
El tema de este año es Miami Vice! ¡Vamos a celebrar, al estilo de glamour de Miami en las 80s, con música en vivo de el increíble ganador del premio Grammy y músico Marlow Rosado y su Orquesta!
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The 40th Anniversary Celebration Unite Walk will be held on Saturday, October 14th at the NSU Campus in Davie to raise awareness of bleeding disorders that affect thousands in the state of Florida. All funds raised for the Unite Walk support Florida Hemophilia Association's mission to bring invaluable education, support, and advocacy to improve the quality of life for the community.
Friends, families, and supporters of the bleeding disorders community will unite for an exciting day outdoors with friends, food, music, prizes, activities, and more fun for an important cause!
With this year's Unite Walk taking place on the exact date of our organization's 40-year Anniversary, we're kicking it off with the 40 Days for 40 Years fundraising campaign to reach our $100K goal!
Set Up, Send Out, See the Support
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Set Up- Set up your page and share your story for the Walk’s 40 Days for 40 Years campaign. (your story, your loved one’s story, experiences)
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Send Out- Send out your fundraising link to others near and far. People want to support a great person and a great cause.
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See the Support- See the support of your close circle, families, friends, business owners, business contacts and so many others when asked. Stay tuned for more information on this fun 40 Days for 40 Years Walk campaign.
Start a Walk team, join a Walk team, register, donate, support, spread the word, Save the Date, and UNITE this October 14th!
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Florida Hemophilia Association
https://floridahemophilia.org/
915 Middle River Drive, Suite 501
Ft Lauderdale, FL 33304
Phone: (305) 235-0717 | E-mail: info@floridahemophilia.org
If you would like to advertise in future editions of our official newsletter, please e-mail us at admin@floridahemophilia.org.
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