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2016 LIFELINE-Spring.qxp_Layout 1
The Official Newsletter of the Florida Hemophilia Association Spring 2016 Walk in theJungle INSIDE Executively Speaking Page 2 6th Annual NHF News Page 13, 14, 15 Community Corner Page 4, 5, 9 16 FHA Resource Center Page 19 Honorary Chair “SAVE THE DATE” Lorena Estrada in supporting this event Dolphin Day Camp Friday, June 24 Friday, July 8 Friday, August 5 Educational Dinner Thursday, June 16 NHF 68th Annual Meeting July 21-23 WFH 2016 World Congress July 24-28 33rd Annual Family Education Symposium August 12-14 Educational Event August 28 Teen and Young Adult Retreat September 2-5 O n May 1, 2016, we came together again at Jungle Island for the 6th Annual Walk in the Jungle. It was an absolutely beautiful day spent in the company of a wonderful group of people uniting to raise needed funds and awareness for the bleeding disorder community! This year, we had over 1,000 registered Walkers! Each year, we have been able to raise the level of awareness for hemophilia and other inherited bleeding disorders. FHA’s main goal is to help educate people, not just those affected, but their family, care-givers, friends, and the general public, as well. With such a great turnout, we were able to do just that, both inside and out of the bleeding disorder community. The funds from this year’s Walk will go towards the many programs like the Teen and Young Adult Retreat and the Annual Family Education Symposium, among numerous other events. Funds will also go towards advocacy efforts, like Legislative Days, where members of the community go to Washington in order to discuss issues that affect them and their families with their representatives; towards financial assistance for families in need through our Compassionate Care initiative; and finally, towards contributing to research so that a cure may one day be found. (Continue page 2) ExecutivelySpeaking With summer quickly approaching, I’d like to tell you about some of the exciting opportunities we here at FHA have been planning for you! This summer, there will be three Dolphin Day Camp sessions offered. We’re booking up fast so call us for additional information soon to enroll your child. In August, we will be hosting our 33rd Annual Family Educational Symposium (FES) scheduled on August 12- 14. This year’s meeting will begin on Friday. FES is a fun family weekend where you’ll meet new friends, network, and you’ll also have the opportunity to learn something new at one of the many sessions facilitated by experts in the field of bleeding disorders! Please be sure to complete your registration packets and get them in before June 13, as space may be limited. I am very excited to announce that our Teen and Young Adult Retreat will return again on September 2 -5. The retreat is a unique experience for the young men and women of our community to enjoy activities specifically designed for them and have a chance to build their leadership skills. For more information, please feel free to call us. MensajeEjecutivo Con el verano acercándose rápidamente, me gustaría hablarle de algunas de las interesantes oportunidades que aquí en la FHA han estado planeando para usted! Este verano, habrá tres sesiones Dolphin Day Camp. Estamos reservar rápido, así que llame para obtener información adicional antes de inscribir a su hijo. En agosto, estaremos realizando nuestra edición número 33 del Simposio para la Educación Familiar (FES) programado de agosto 12- 14. La reunión de este año comenzará el viernes. FES es un fin de semana de diversión familiar donde conocerá a nuevos amigos, la red, y también tendrá la oportunidad de aprender algo nuevo en una de las muchas sesiones facilitadas por expertos en el campo de los trastornos de sangre! Por favor asegúrese de completar sus paquetes de registro y conseguir antes del 13 de junio, ya que el espacio puede ser limitado. Estoy muy emocionado de anunciar que nuestro adolescentes y jóvenes adultos Retiro volverán de nuevo el 2 de septiembre -5. El retiro es una experiencia única para los hombres y mujeres jóvenes de nuestra comunidad para disfrutar de actividades diseñadas específicamente para ellos y tienen la oportunidad de desarrollar sus habilidades de liderazgo. Para obtener más información, no dude en llamarnos. Finally, I’d like to thank EVERYONE who participated in this year’s Walk!! We had an amazing turnout, with over 1,000 registered Walkers and we raised over $115,000!!! Every person who came and helped raise funds played an integral part in the success of the Walk. I’d also like to thank our wonderful volunteers for their hard work and all of our local sponsors for their generous donations! Por último, me gustaría dar las gracias a todos los que participaron en la caminata de este año!! Tuvimos una participación increíble, con más de 1.000 caminantes registrados y recaudamos más de $ 115,000 !!! Cada persona que vino y ayudó a recaudar fondos jugó un papel integral en el éxito de la caminata. También me gustaría agradecer a todos nuestros voluntarios por su gran trabajo y todos nuestros patrocinadores locales por sus generosas donaciones! I look forward to seeing you all soon! Espero verlos a todos pronto! Debbi Adamkin FHA Executive Director 6th Annual Debbi Adamkin Directora Ejecutiva de FHA Walk in the Jungle, continued... At this year’s Walk, we raised over $115,000!!! Raising this amount of funding is remarkably instrumental in continuing all of the things that we do here at FHA to support the bleeding disorder community and their families. Thank you again to everyone who participated including Honorary Chair, Lorena Estrada, WSVN Weekend Morning Anchor, and Co-chairs Jennifer Lopez and Perla Iglesias. You are greatly appreciated, by FHA and all of the families we serve 2 SPRING 2016 • LIFELINE throughout the state of Florida! A special thanks to all of our wonderful volunteers who gave their valued time in order to ensure that the Walk ran smoothly! And finally, thank you to our sponsors whose generous contributions helped make the Walk even more successful! We’re excited to see you all at the 7th Annual Walk in the Jungle next year!!! Thank you to all of our Sponsors 6th Annual Walk in the Jungle NATIONAL SPONSORS • Baxalta • Novo Nordisk • Bayer • Octapharma • Grifols • Pfizer • Option Care • Biogen • Accredo LOCAL SPONSORS Gold Sponsors • Bayer • CSL Behring • CVS Caremark • Novo Nordisk • Emergent • Octapharma • Genentech Silver Sponsors • Thrivent Financial Bronze Sponsors • Accredo • BioTek reMEDys • Bio RX • Matrix • Bullet Line • Clover • Soleo Health • BrightStar • Embassy Suites West Palm Beach- Central Congratulations to all of our Teams Top Fundraiser Leslie Clark Photo Booth Sponsor • Kidz Medical Services Top Ten Teams 1. Shaun’s Sharks Kilometer Sponsors • Bay Graphics, Inc. • Group M Advertising & Design 2. Carly’s Angels 3. Team Alex Dones 4. Team Jaizer Breakfast Sponsor • Cottrill’s 5. We Are CSL 6. FHA Blood Drops In-Kind Sponsor • Del Monte Fresh Produce • Jungle Island • Kennesaw Juice • Krispy Kreme • MC Alex • NuGo Nutrition • Miami Marlins • Florida Panthers • KenographyOne Photographic • Biogen • Starbucks • Zalez Photography 7. Victorious Victoria 8. - NiccoAngel - CoreyJoseph - ChadKessler 9. Abraham Lincoln-Peru 10. Palmetto Squared Most Creative Team T-Shirt 1. We are CSL 2. Carly’s Angels 3. Team Alex Dones * After May 1st, donations have continued to come in. Amounts may vary. SPRING 2016 • LIFELINE 3 World Hemophilia Day th April m1i 6 Tower Mia with Red lights The children and their families convened outside to check out the beautifully lit Miami Tower with RED lights 4 SPRING 2016 • LIFELINE O n April 16, our community gathered together over food, beverages, and interactive activities as we celebrated World Hemophilia Day at the Hyatt Regency Hotel in Miami. Since the establishment of World Hemophilia Day in 1989, its purpose has been to raise awareness about inherited bleeding disorders for the 400,000 people affected worldwide. This day is extremely special because it provides the unique opportunity for our community to connect locally, globally, and to raise awareness for hemophilia and honor the progress that has been made. One of the evening’s main events was a team-based activity that involved building a factor factory machine that replicates clotting factors and how hemophilia works in the human body. The activity was meant to simplify the clotting cascade so that we could understand it a bit better. The children and their families had a blast doing this activity and then seeing the final results! After the activity everyone convened outside to check out the beautifully lit Miami Tower with RED lights, which represented the Florida Bleeding Disorder Community. Special thanks to Biogen for sponsoring this event that was held in several major cities across the country. SPRING 2016 • LIFELINE 5 The First Tee Submitted by: Sergio Carlos, Albania and Carlos Moreta. The First Tee is a golf class project for kids and teenagers, it has presence in the entire USA, and in South Florida, it’s represented by the Broward and Dade chapters. Sergio Carlos, along with other kids, had been invited by the Florida Hemophilia Association (FHA) to take part in this program which takes place at the Pompano Beach Municipal Golf Course over the course of 9 weeks. The kids that attend this program not only learn the techniques of playing golf but they also learn about the Nine Core Values which are Honesty, Integrity, Sportsmanship, Respect, Confidence, Responsibility, Perseverance, Courtesy, and Judgment. Sergio was very enthusiastic about Respect, which includes the 3 R’s and those have the following meaning; respect others, respect our surroundings, and respect ourselves. During the training the kids would be practicing Putting, Full Swing, and other golf exercises. Sergio’s favorite exercise was the Full Swing, and of course at the end of the practice the “Go First Tee” shout out. For us parents, we see this program as very useful and educational not only for now but also for our kids’ future. Thank you FHA for this opportunity and to First Tee for all the fun and the great program! This session of First Tee was made possible by a grant from The First Tee Submitted by: Sergio Carlos, Albania and Carlos Moreta. First Tee es un proyecto de clases de golf para niños y adolescentes, el proyecto tiene presencia en todo EE.UU., y en el sur de la Florida está representado por los capítulos de Broward y Dade . Sergio Carlos, junto con otros niños, fue invitado por la Asociación de Hemofilia de la Florida ( FHA ) para participar en este programa, que es impartido en Pompano Beach Municipal Golf Club durante 9 semanas. Los niños que asisten a este programa no sólo aprenden las técnicas de la práctica del golf, sino que también aprenden sobre los nueve valores fundamentales que son la honestidad, la integridad, la deportividad, respeto, confianza, responsabilidad, perseverancia, cortesía y el buen juicio. Sergio le apasiona el Respeto, que incluye las 3 R’s y tienen el siguiente significado; respetar a los demás, respetar nuestro entorno y respetar a nosotros mismos. Durante el entrenamiento los niños practican Putting, Full Swing y otros ejercicios del golf. El ejercicio favorito de Sergio es el Full Swing, y por supuesto al final de la practica el grito "Go First Tee!". Para nosotros los padres, vemos este programa como muy útil y educativo no sólo por ahora, pero también para el futuro de nuestros hijos. Gracias a FHA por esta oportunidad y First Tee por toda la diversión y el gran programa! Esta sesión de “First Tee” fué posible por una donación de SPRING 2016 • LIFELINE 9 NEW DATE! NEW LOCATION! FRIDAY AUGUST 12 – SUNDAY, AUGUST 14 EMBASSY SUITES BY HILTON WEST PALM BEACH CENTRAL 1601 Belvedere Rd., West Palm Beach, FL 33406 REGISTER TODAY! AV AI LA BL E Please help us in welcoming our new Board Member JOHN NOVOA 10 SPRING 2016 • LIFELINE NHF • eNews 2016 Preliminary Data Show Progress for BioMarin’s Factor VIII Gene Therapy April 21, 2016 B ioMarin Pharmaceutical Inc. recently announced preliminary data from an ongoing Phase 1/2 clinical trial with BMN 270, the company’s investigational gene therapy for the treatment of individuals with hemophilia A. The gene therapy program associated with BMN 270 was originally licensed in February 2013 from the University College London and St. Jude Children’s Research Hospital in Memphis, TN, and has since been developed by San Rafael, CA-based BioMarin. BMN 270 uses adeno-associated viruses (AAVs) as delivery vehicles, or vectors, to carry the genetic codes that prompt the production of the factor VIII (FVIII) protein that is deficient in people with hemophilia A. Ideally, AAVs deliver the genetic material into living cells to sustain therapeutic effect without causing disease or triggering significant immune responses. The purpose of the phase 1/2 trial, the recruitment for which is still ongoing, is to evaluate the safety and efficacy of BMN 270 in up to 12 individuals with severe hemophilia A. To date, a total of eight patients have received a single dose of the therapy and six of those have been treated at the highest dose. Investigators reported that patients at the highest dose showed rising FVIII activity levels that ranged between 4% and 60%, with five of six of the “high dose” patients now over 5% and two of six at over 50%. All high dose patients saw their hemophilia A severity shift positively from severe (less than 1% FVIII) to the either moderate (1%-5%), mild (5%-40%) or normal (50%-150%) FVIII levels. Even a modest boost in FVIII levels for an individual with hemophilia A can lead to a significant reduction in bleeding complications and have a dramatic impact on quality of life. Alanine aminotransferase (ALT) tests, which help screen for elevated enzyme levels in the blood and subsequent adverse effects on liver function, are also being employed during the study. Some of the early trial patients did experience elevated ATL levels, therefore investigators decided to administer prophylactic corticosteroids (steroid hormones) to all the patients. To date, no cases of elevated ALT have been reported. “If BMN 270 allows hemophilia A patients to maintain around 5% of normal levels of factor VIII, it could have a real and meaningful clinical benefit by reducing the need for factor VIII infusions and spontaneous bleeds,” said John Pasi, PhD, FRCP, Professor of Haemostasis and Thrombosis at Barts and the London School of Medicine and Dentistry and primary investigator for the BMN 270 Phase 1/2 clinical trial. “I am looking forward to further assessing the data over the 16 weeks and beyond in this ongoing study.” According to the BioMarin press release, Phase 3 “design preparation and high volume manufacturing plans” are underway. Source: BioMarin press release dated April 20, 2016 SPRING 2016 • LIFELINE 13 NHF • eNews 2016 Los datos preliminares muestran un avance en la genoterapia para el factor VIII de BioMarin 21 de abril de 2016 R ecientemente, BioMarin Pharmaceutical Inc. presentó los datos preliminares de un ensayo clínico de fase 1/2 actualmente en curso con BMN 270, la genoterapia en fase de investigación de la empresa para el tratamiento de personas con hemofilia A. El programa de genoterapia asociado al BMN 270 se autorizó originalmente en febrero de 2013 en la University College London y el St. Jude Children’s Research Hospital en Memphis, TN, y partir de entonces lo ha desarrollado la empresa BioMarin, con sede en San Rafael, CA. El BMN 270 utiliza virus adenoasociados (AAV, por sus siglas en inglés) como vehículos transportadores, o vectores, para llevar los códigos genéticos que estimulan la producción de la proteína del factor VIII (FVIII) de la que carecen las personas que padecen hemofilia A. De manera ideal, los AAV introducen el material genético dentro de células vivas para mantener el efecto terapéutico sin producir enfermedad ni desencadenar respuestas inmunitarias importantes. El objetivo de este ensayo de fase 1/2, en el cual todavía se están inscribiendo pacientes, es evaluar la seguridad y eficacia del BMN 270 en hasta 12 personas con hemofilia A grave. Hasta la fecha, ocho pacientes han recibido una dosis única del tratamiento y a seis de ellos se les administró la dosis más alta. Los investigadores informaron que los pacientes que recibieron la dosis más alta mostraron concentraciones en aumento de la actividad del FVIII que oscilaron entre el 4% y el 60%; actualmente, cinco de los seis pacientes que recibieron la “dosis alta” se encuentran por encima del 5% y dos de los seis se encuentran por encima del 50%. Todos los pacientes que recibieron la dosis alta tuvieron un cambio positivo en la intensidad de la hemofilia A, de concentraciones de FVIII graves (menos de un 1% de FVIII) a moderadas (1% a 5%), 14 SPRING 2016 • LIFELINE leves (5% a 40%) o normales (50%-150%). En una persona que padece hemofilia A, incluso un incremento modesto en las concentraciones de FVIII puede dar lugar a una reducción apreciable en las complicaciones por sangrado y tener un impacto considerable en la calidad de vida. Durante el estudio, también se están utilizando análisis para la alanina-aminotransferasa (ALT), los cuales ayudan a determinar la presencia de concentraciones elevadas de las enzimas en la sangre y los posteriores efectos adversos en el funcionamiento del hígado. Algunos de los primeros pacientes del ensayo presentaron concentraciones elevadas de ATL; por esto, los investigadores decidieron administrarles corticoesteroides (hormonas corticoesteroideas) de forma profiláctica a todos los pacientes. Hasta la fecha, no se han notificado casos de elevación de la ALT. “Si el BMN 270 les permite a los pacientes con hemofilia A mantener alrededor de un 5% de las concentraciones normales del factor VIII, podría brindar un beneficio clínico real y significativo al reducir la necesidad de infusiones del factor VIII y reducir las hemorragias espontáneas”, expresó John Pasi, PhD, FRCP, Profesor de of Hemostasia y Trombosis en Barts y la London School of Medicine and Dentistry e investigador principal en el ensayo clínico de fase 1/2 para el BMN 270. “Espero continuar evaluando los datos durante las 16 semanas y más allá en este estudio en curso”. Según el comunicado de prensa de BioMarin, se está trabajando en “preparaciones del diseño y planes de fabricación en grandes volúmenes” de fase 3. Fuente: Comunicado de prensa de BioMarin de fecha 20 de abril de 20, 2016 NHF • eNews 2016 SIPPET- Study Results Published in NEJM T May, 2016 he detailed findings of the much anticipated SIPPET (Survey of Inhibitors in Plasma-Products Exposed Toddlers) study were published today, May 26, 2016. The study, “A Randomized Trial of Factor VIII and Neutralizing Antibodies in Hemophilia A,” appeared in The New England Journal of Medicine. The lead investigator was Flora Peyvandi, MD, University of Milan. Peyvandi and fellow investigators found that previously-untreated patients (PUPs) had a significantly higher incidence of inhibitors when treated with recombinant factor VIII (rFVIII) than those treated with plasma-derived factor VIII (pdFVIII) containing von Willebrand factor (VWF). Developing an inhibitor to treatment remains the most prominent and challenging complication for clinicians, occurring in approximately 30% of hemophilia patients globally. Back in December, a preview of the SIPPET findings presented during the American Society of Hematology’s annual conference raised considerable interest among patients, providers and industry. While earlier studies have assessed the overall risk of inhibitor development in patients with hemophilia, the SIPPET study is the first large-scale international trial to randomize patients prospectively for the immunogenicity of pdFVIII vs. rFVIII usage. SIPPET was a prospective randomized study which took place between January 2010 and December 2014 and collected data on 251 children (<6 years of age with severe hemophilia A) from 42 sites in 14 countries in Africa, North and South America, Asia and Europe. The authors reported that rFVIII was associated with an 87% higher incidence than pdFVIII. Half of the patients were randomly assigned to receive either pdFVIII or rFVIII. The authors reported an overall inhibitor incidence rate of 26.8%. The National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) will be reviewing the full study, making a thorough assessment of these findings and best determine what changes may be needed to the current MASAC recommendations for PUPS. Source: New England Journal of Medicine, original article, published May 26, 2016 NEJM publica los resultados del estudio SIPPET Mayo, 2016 H oy, 26 de mayo de 2016, se publicaron los resultados detallados del grandemente anticipado estudio SIPPET (Estudio de inhibidores en lactantes mayores expuestos a productos plasmáticos). El estudio, “A Randomized Trial of Factor VIII and Neutralizing Antibodies in Hemophilia A” (Ensayo aleatorizado del factor VIII y los anticuerpos neutralizantes en la hemofilia A), apareció en The New England Journal of Medicine. El investigador principal fue la Dra. Flora Peyvandi, de la Universidad de Milán. Peyvandi y sus colegas investigadores encontraron que los pacientes sin tratamiento previo tenían una incidencia considerablemente mayor de inhibidores cuando recibían tratamiento con factor VIII recombinante (rFVIII) que aquellos tratados con factor VIII derivado de plasma (pdFVIII) que contenía el factor de Von Willebrand (FVW). La aparición de un inhibidor contra el tratamiento sigue siendo la más importante y problemática complicación para los médicos, y ocurre en aproximadamente el 30% de los pacientes con hemofilia a nivel mundial. En este pasado diciembre, un avance de los resultados del SIPPET que se presentó durante la conferencia anual de la Sociedad Estadounidense de Hematología suscitó considerable interés entre pacientes, profesionales sanitarios y representantes de la industria. Aunque estudios previos han evaluado el riesgo global de que aparezcan inhibidores en los pacientes con hemofilia, el estudio SIPPET es el primer ensayo internacional a gran escala que aleatoriza pacientes de manera prospectiva para determinar la capacidad inmunógena del uso de pdFVIII frente a rFVIII. El SIPPET fue un estudio aleatorizado que se llevó a cabo entre enero del 2010 y diciembre del 2014, y en el que se recopilaron datos sobre 251 niños menores de 6 años con hemofilia A grave de 42 centros en 14 países de África, América del Norte y del Sur, Asia y Europa. Los autores reportaron que el rFVIII se asoció a una incidencia un 87 % mayor que el pdFVIII. Se asignó aleatoriamente a la mitad de los pacientes a recibir el pdFVIII o el rFVIII. Los autores reportaron una tasa de incidencia global de inhibidores del 26.8 %. El Consejo Asesor Médico y Científico de la Fundación Nacional para la Hemofilia (MASAC) revisará el estudio en su totalidad, y llevará a cabo una evaluación minuciosa de los resultados para determinar mejor los cambios que pudieran necesitarse en las recomendaciones actuales del MASAC para los pacientes sin tratamiento previo. Fuente: New England Journal of Medicine, artículo original, publicado el 26 de mayo de 2016 SPRING 2016 • LIFELINE 15 FHA ResourceCenter MISSION STATEMENT CONTACT NUMBERS 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. HEMOPHILIA AND BLEEDING DISORDER CLINICS All Children’s Outpatient Care Clinic Pediatric Cancer and Blood Disorders Center 601 5th Street South, Third Floor St. Petersburg, FL 33701 Phone: (727) 767-4931 www.allkids.org Center for Children’s Cancer and Blood Disorders at Arnold Palmer Hospital for Children 92 West Miller St., MP 318 Orlando, FL 32806 Phone: (321) 841-8588 www.orlandohealth.com Nemours Children’s Clinic, Jacksonville Department of Pediatric Hematology/Oncology 807 Children’s Way Jacksonville, FL 32207 Phone: (904) 697-3789 (904) 697-3600 www.nemours.com Nicklaus Children’s Hospital Kidz Medical Services Division of Hematology/Oncology 3100 SW 62 Ave Suite 121 Miami, Florida 33155 Phone: (305) 662-8360 University of Florida Department of Medicine Adult Hemophilia P.O. Box 100277 Gainesville, FL 32610 Phone: (352) 265-0725 Sacred Heart Pediatric Hemophilia Program, Pensacola Phone: (850) 416-7712 St. Joseph’s Children’s Hospital Pediatric Hematology Oncology Out-patient Clinic 3001 W. Dr. Martin Luther King Jr. Blvd. Tampa, FL 33607 Phone: (813) 554-8294 or (813) 321-6820 The University of Miami Hemophilia Treatment Center Pediatric Clinic Location Alex’s Place at Sylvester 1475 NW 12th Avenue Suite C103 Miami, FL 33136 Phone: (305) 689-7210 Joe DiMaggio Children’s Hospital Pediatric Specialty Center 1150 N. 35th Ave. Suite 520 Hollywood, FL 33021 Phone: (954) 986-2234 University of Florida Pediatric Hematology/ Oncology P.O. Box 100296 Gainesville, FL 32610 Phone: (352) 273-9120 www.peds.ufl.edu/ divisions/hemonc/ Adult Clinic Location ACCW-3A 1611 NW 12th Avenue Miami, FL 33136 Phone: (305) 243-6925 www.htcextras.org Lee Memorial Hospital Department of Pediatric Hematology & Oncology 9981 So. Healthpark Dr. Suite 156 Ft. Myers, FL 33908 Phone: (239) 332-1111 Nemours Children’s Clinic, Orlando Department of Pediatric Hematology/Oncology 13535 Nemours Parkway Orlando, FL 32827 Phone: (904) 697-3789, (904) 697-3600 USF Adult Hemophilia Center Department of Internal Medicine 12901 Bruce B. Downs Boulevard, MDC 19 Tampa, FL 33612 Phone: (813) 974-1325 Do the 5 1 Get an annual comprehensive check-up at a hemophilia treatment center. 2 Get vaccinated – Hepatitis A and B are preventable. 3 Treat bleeds early and adequately. 4 Exercise to protect your joints. 5 Get tested regularly for blood-borne infections Florida Hemophilia Association Office (888) 880-8330 President Jon Salk Executive Director Debbi Adamkin (305) 235-0717 [email protected] National Hemophilia Foundation (800) 424-2634 Hemophilia Federation of America (800) 230-9797 LA Kelley Communications, Inc. Free resource material on Hemophilia (978) 352-7657 ABOUT THIS PUBLICATION LIFE LINE is the official Newsletter of the Florida Hemophilia Association. It is produced quarterly and distributed free of charge to requesting members of the bleeding disorder community. Florida Hemophilia Association Headquarters 915 Middle River Drive, Suite 421 Ft. Lauderdale, FL 33304 Toll Free: (888) 880-8330 www.floridahemophilia.org Translation: Roxanna Delgado Design and Production: Group M, Advertising & Design 305-235-2538 SPRING 2016 • LIFELINE 19 Florida Hemophilia Association (Formerly known as Florida Chapter, NHF) 915 Middle River Drive, Suite 421 Ft. Lauderdale, FL 33304
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