OCT 8-9, 2021

National Conference for Women and Teens with Hemophilia and Rare Factor Deficiencies

DESCRIPTION

Hear Our Voices: Setting the Agenda

Friday, October 8 & Saturday, October 9, 2021

Algunas sesiones serán interpretadas al español.

APPLICATIONS ARE NOW OPEN

Accepted attendees will receive our conference enhancement package if they apply by the September 19 deadline. 

To apply you must be female or someone who has or has had the potential to menstruate, age 14 or older and meet the following criteria:

  • Diagnosed with or a carrier of hemophilia A (VIII/8) or B (IX/9)
  • Have a family history of hemophilia A (VIII/8) or B (IX/9) with bleeding symptoms such as heavy periods, easy bruising, or experiences with bleeding complications after dental work, surgery, or childbirth
  • Diagnosed with a rare factor deficiency including fibrinogen (I/1), prothrombin (II/2), V/5, VII/7, X/10, XI/11, or XIII/13 (excluding Factor 5 Leiden)

Visit www.hfmich.org/rareeligibility to learn more about rare bleeding disorder eligibility. 

Women and teens who are eligible to join our special two-day virtual program will learn from national experts and health care providers, and have numerous opportunities to connect with other attendees who each bring their own unique wisdom and experience of living with hemophilia and rare factor deficiencies.

  • There is NO CHARGE for this two-day experience
  • To participate in this conference you will need a smart phone, tablet, or computer and the ability to connect to the internet or your cellular service.
  • Questions? Contact Patrice Thomas at pthomas@hfmich.org, 734.544.0015

Click here to download a PDF of the National Women’s Conference buckslip. 

  • Going Deep and Making a Splash: Conference Kickoff with GutMonkey, supported by Pfizer
    Let’s dive in! Join us at the National Conference for Women and Teens with Hemophilia and Rare Factor Deficiencies kickoff as we explore the scope and spectrum of health, identity, and navigating vulnerability in the “rapids” of our changing world. We’ll uncover what’s in the water below the tip of the iceberg, paddle the tributaries between letting go and cultivating growth, and cast a net with others in the community to see what we catch. Let’s make a splash! 
    Speakers: Haelynne Barron and Margaret Bridges, GutMonkey 

  • Update: National Organizations Advocating for Women and Girls
    Speakers: Maureen Baldwin, MD, MPH; Jeanette Jones; Jhon H. Velasco, MA, RYT300; Angela Weyand, MD 

  • Iron Deficient Anemia: What You Should Know
    Speakers: Jim Munn, MS, BS, BSN, RN-BC; Alan Mast, MD

  • Utilizing Ultrasound to Identify and Manage Joint Bleeds
    Speakers: Stacie Akins, PT, MHS; Joanna Davis, MD

  • Emergent Women and Girl’s Health Challenges: Rare Factor Deficiencies and Planning for Pregnancy and Delivery
    Speakers: Meera Chitlur, MD; Jill Johnsen, MD

  • Options for Treatment: Utilizing Factor and Prophylaxis
    Speaker: Robert F. Sidonio, Jr., MD, MSc

    Algunas sesiones serán interpretadas al español.

  • Stacie Akins, PT, Physical Therapist, Indiana Hemophilia and Thrombosis Center, Indianapolis, IN
  • Maureen K. Baldwin, MD, MPH, Associate Professor of Obstetrics & Gynecology, Oregon Health and Science University, Portland, OR
  • Haelynne Barron, Program Director, GutMonkey
  • Honey Blankenship, MSN, MBA, RN, CCM, CPN, Senior Clinical Specialist, Takeda, Hebron, KY
  • Karen Boyd, LMSW, Clinical Social Worker, Michigan State University Center for Bleeding and Clotting Disorders, Lansing, MI
  • Margaret Bridges, Program Manager, GutMonkey
  • Meera Chitlur, MD, Medical Director, Hemophilia Treatment Center and Hemostasis Program, Special Coagulation Laboratory, Children’s Hospital of Michigan, Detroit, MI
  • Joanna Davis, MD, Associate Professor, Medical Director, Pediatric Comprehensive Hemophilia Treatment Center, University of Miami, Miami, FL
  • Steven Edwards, LMSW, Social Worker, Michigan State University Center for Bleeding and Clotting Disorders, Lansing, MI
  • Patricia Espinosa Thomson, Community Liaison, Takeda
  • Jill Foley, RDH, RN, BSN, Nurse Clinician, Michigan State University Center for Bleeding and Clotting Disorders, Lansing, MI
  • Anne Greist, MD, Co-Medical Director, Indiana Hemophilia and Thrombosis Center, Indianapolis, IN
  • Anne Henningfeld, MA, CTRS, Managing Partner, Beyond Recreation, NC
  • Gretchen HoverCo-Founder and Managing Partner, Imbue Partners, LLC 
  • Jill Johnsen, MD, Associate Member, Bloodworks Northwest Research Institute; Associate Professor, University of Washington, Seattle, WA
  • Jeannette Jones, Program Manager, Hemophilia Federation of America, OK
  • Roshni Kulkarni, MD, Professor Emerita, Department of Pediatrics and Human Development, and former Director, Michigan State University Center for Bleeding and Clotting Disorders, Lansing, MI
  • Alan Mast, MD, Senior Investigator, Blood Research Institute, Blood Center of Wisconsin, Milwaukee, WI
  • Heather Lynn Messenger, MSDH, Registered Dental Hygienist, Michigan State University Center for Bleeding and Clotting Disorders, Lansing MI
  • Jim Munn, MS, BS, BSN, RN-BC, Program Administrator and Nurse Coordinator, Hemophilia and Coagulation Disorders Program, University of Michigan Health System, Ann Arbor, MI
  • Mina D. Nguyen-Driver, PsyD, Psychologist, Oregon Treatment Center, Oregon Health and Science University, Portland, OR
  • Corbett Reinbold, RN, BSN, CCRC, Nurse Coordinator, Comprehensive Center for Bleeding Disorders, Versiti Blood Center of Wisconsin, Milwaukee, WI 
  • Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation, New York, NY
  • Robert F. Sidonio, Jr.MD, MScAssociate Director and Director of Clinical Operations and Clinical Research, Hemostasis and Thrombosis ProgramAflac Cancer and Blood Disorders Center, Children’s Healthcare of Atlanta; Associate Professor of Pediatrics, Emory University School of Medicine, Atlanta, GA
  • Charity StadlerRN, BSN, Nurse Coordinator, Detroit Medical Center, Detroit, MI
  • Jhon H. Velasco, MA, RYT300, Manager of Education and Training, National Hemophilia Foundation, New York, NY
  • Sarah Watson, LPC, CST, ATR, Certified Sex Therapist, Troy, MI
  • Angela Weyand, MD, Pediatric Hematology-Oncology, University of Michigan, Ann Arbor, MI
  • Jeanne White-Ginder, Mother of Ryan White, Hemophilia/AIDS Activist

Eschucar Nuestras Voces: Establecer la Agenda
del 8-9 de octubre de 2021

Información de la Conferencia:

Mujeres y las adolescentes que son eligibles para participar en nuestro programa virtual de dos días aprenderán de expertos nacionales y de los proveedores de atención médica y tendrán numerosas oportunidades para que se conecten con otras participantes que aportan su inigualable sabiduría única y experiencia de vivir con la hemofilia y deficiencias de factores raros.
• Esta experiencia de dos días ES GRATUITA
• Para más información, vaya en línea al: hfmich.org/womens-conference
• Las participantes aceptadas recibirán nuestro paquete de mejora de la conferencia si presentan la solicitud antes del 19 de septiembre.
• ¿Tiene preguntas? Póngase en contacto con Patrice Thomas al pthomas@hfmich.org

Programa a simple vista:

  • Profundizar y Dar un Gran Efecto: Inicio de la Conferencia con GutMonkey, con el apoyo de Pfizer
    ¡Sumerjámonos! Acompáñanos en la Conferencia para Mujeres y las Adolescentes con Hemofilia y Deficiencias Raras de Factores, mientras exploramos el alcance y el espectro de la salud, la identidad y la navegación de la vulnerabilidad a nuestro «rápido» mundo cambiante. Descubriremos lo que hay en el agua por debajo de la punta del iceberg, remaremos por los afluentes entre dejar ir y cultivar el crecimiento, y echaremos una red con otros en la comunidad para ver lo que pescamos.  ¡Hagámos un chapuzón!
    Ponentes: Haelynne Barron y Margaret Bridges, GutMonkey

     

  • Actualización: Organizaciones Nacionales que Abogan por las Mujeres y Niñas
    Ponentes:  Maureen Baldwin, MD, MPH; Jeanette Jones; Jhon H. Velasco, MA, RYT300; Angela Weyand, MD
  • Anemia Ferropénica: Lo Que Usted Debe Saber
    Ponentes: Jim Munn, MS, BS, BSN, RN-BC; Alan Mast, MD

     

  • Utilización de la Ecografía para Identificar y Gestionar las Hemorragias Articulares
    Ponentes:  Stacie Akins, PT, MHS; Joanna Davis, MD

     

  • Duplicar la Complejidad: Sangrado Menstrual Abundante y Complicaciones Uterinas
    Ponente: Meera Chitlur, MD

     

  • Opciones de Tratamiento: Utilización del Factor y Profilaxis
    Ponente:  Robert F. Sidnio, Jr., MD, MSc

 

There are a lot of people who have a lot of opinions about what teen girls and young women should do with their bodies. Who do you listen to when it comes to your extra-special bleeding disorder body? Do you have a squad of smart, trustworthy women who know what you’re going through? Come to the National Conference for Women and Teens with Hemophilia and Rare Factor Deficiencies and find your people. 

Sessions:

  • Social Challenges for Girls Living with a Bleeding Disorder:
    A highly interactive session for girls and young women to discuss life with a chronic condition, including disclosure, coping with heavy periods, and self-care.
  • Ask the Expert: Bleeding Disorders and Medical Challenges:
    In a relaxed, laid back session, our amazing expert nurse will answer all questions related to any medical aspect of living with a bleeding disorder! Questions can be submitted anonymously. 

At the Hemophilia Foundation of Michigan, we want you to know that we value your personal information and that we respect your privacy. No personally identifiable attendee information from your application will be shared with our industry partners including names, personal demographics, contact information, or any other details that could be used to identify you. We may summarize information to help inform programming and for research purposes. 

During the conference, attendees have the right to determine whether to share personal information in large group sessions where industry partners may be present as well as how they share their name in the attendee section. 

Sponsors

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Community Lead Sponsors

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Event Sponsors

HFM does not endorse any specific product or company. 

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