NHF12-210

Been There, Done That! Raising Parents When you Have a Bleeding Disorder

Speakers: Michele Cecil; Brent Movitz; Jozef Zwier; Moderators: Jennifer Maahs, MSN, PNP; Tonya Hegwood, MSW, LCSW

A panel of young adults with bleeding disorders share childhood experiences of their parents’ adjustment to their diagnosis. We discuss the challenges a bleeding disorder can present, as well as the growth that can occur in both parents and children as a result. This conversation for all will reassure new families that life with a bleeding disorder need not be as frightening as the initial diagnosis.

MP3

$10.00

$10.00

NHF12-012

NYLI: Who Are We? What Do We Do?

Speakers: Samantha Jankins; Alexandra Johnson; Sean Jeffrey

The National Youth Leadership Institute (NYLI) is a leadership training program for a diverse group of young women and men affected by bleeding and clotting disorders, ages 18-25. NYLI was created in 2004 to foster the development of leaders and help NHF chapters/associations across the country build strong youth programs. During this session you have the opportunity to meet a few members from NYLI. Learn about different projects they have been involved in over the past year and the application process. Members will highlight their experiences at NHF events, including Washington Days, Youth Fit, and serving as representatives on the NHF Board of Directors, Diversity Outreach Working Group, Steps for Living Task Force, and Annual Meeting Planning Committee.

Audio CDs: 1

Audio CD

$12.00

$12.00

NHF12-127

Sugar and Spice and Not Everything Nice: Complementary and Alternative Medications

Speakers: Miguel A. Escobar, MD; Moderator: Susan Hunter, RN, BSN

During this session the audience learns about complementary and alternative medicine (CAM), including the most common CAM practices in the USA and their costs. Learn about the effects and mechanism of action of the most popular herbs and how they can affect individuals with bleeding disorders. The role of healthcare providers and CAM is also discussed.

Audio CDs: 1

Audio CD

$12.00

$12.00

NHF12-118

Sharing & Caring: Case Studies on VWD

Speakers: Betsy Koval, RN, BSN; Laura-Jean Siggens, RN, MSN, CPN; Angela Lambing, RN, NP; Claudia Lupia, RN, BS, OCN; Kerry Hansen, RN; Charmaine Biega, RN; Moderator: Mary Lou Cygan, MSN, RN, CPNP

During this session we focus on von Willebrand Disease care for a variety of patients seen at the HTC. We address approaches that have been successful in dealing with diverse patient populations and look at unique scenarios.

MP3

$20.00

$20.00

NHF12-110

Head, Shoulders, Knees & Toes: Pros and Cons of Protective Devices

Speakers: Kristen Jaworski, RN, BSN, CCRC

In this session, we discuss safety equipment for daily activities for children with bleeding disorders and the ability of safety measures to ultimately prevent bleeding episodes. We focus on the pros and cons of protective equipment and how to make the best decisions for your family using MedicAlert® guidelines. How important is MedicAlert identification? What is the best safety plan for your child? Can bleeds be prevented? Listen and find out!

Audio CDs: 1

Audio CD

$12.00

$12.00

NHF12-122

Beyond the Label: Carriers and Women with Mild Hemophilia

Speakers: Joanna A. Davis, MD; Lynne Szott, RN, CCM; Moderator: Danielle Schwager

For female carriers, dropping the term “symptomatic carrier” and picking up the label “mild hemophilia” can be more complicated than it seems. Listen to a panel discussion about the benefits and challenges of labels. Topics include implications of labels and diagnosis in terms of insurance, medical care and self-identity.

Audio CDs: 1

Audio CD

$12.00

$12.00

NHF12-211

The Glass is Half Full: Reframing Emotional Challenges for Women with Bleeding Disorders

Speakers: Danielle Nance, MD; Barbara Forss; Moderator: Patrice Thomas, MS, MSW

Many women with bleeding disorders have experienced the frustration of missed diagnosis, the physical and emotional pain of untreated bleeding conditions, and the embarrassment of disclosing personal information in order to explain why they are not feeling well. For some women, there is also guilt associated with passing a genetic condition on to their children. This session provides a time for women to reflect on their feelings about their lived experiences with bleeding disorders or those of their loved ones, and learn about various techniques for coping.

Audio CDs: 1

Audio CD

$12.00

$12.00

NHF12-206

It’s A Small World After All: Telemedicine in HTC

Speakers: Kristen Jaworski, RN, BSN, CCRC; Michelle Witkop, DNP, FNP-BC; Roshni Kulkarni , MD; Judith Andersen, MD; Moderators: Ellen White, RN, MSN; Michelle Witkop, DNP, FNP-BC

This session will teach you the definition of telemedicine, and describe the role of the originating provider and the distant provider. Be able to describe how telemedicine can be used in the research role.

MP3

$10.00

$10.00

NHF12-109

Notions About Potions: A Product Review

Speakers: Glen Roy, RN; Sue Kovats-Bell, RN, BSN; Moderator: Sue Purdie, BSN, RN

This session is a review of current factor products and antifibrinolytics. It includes a review of factor products on the market today with a discussion and comparison of their molecular structure, FDA-approved indications, half-life, storage requirements and reconstitution devices. We also present a review of antifibrinolytics, including the use, dosing, FDA-approved indications and contraindications.

MP3

$10.00

$10.00

Subtotal

$110.00