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
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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!
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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
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Florida Hemophilia Association
(Formerly known as Florida Chapter, NHF)
915 Middle River Drive, Suite 421
Ft. Lauderdale, FL 33304