NHF12-124

Please Tell Me Who You Are: Identifying Different Roles in the Hospital Setting

Speakers: Kristen Jaworski, RN, BSN, CCRC

In this session, we focus on the variety of healthcare providers families with a bleeding disorder will encounter and give effective methods on how to best communicate with them. We define “need to know” information and role play an exercise on how to effectively advocate for your care when dealing with different providers. Leave the session with a list of phrases that will aid in conversations with healthcare providers and a basic template of “need to know” information. Best of all, you will have increased confidence in working with your healthcare team.

MP3

$10.00

$10.00

NHF12-111

Es Un Asunto de Familia: Trabajando Juntos para crear un Ambiente Positivo de Familia

Speakers: Dave Robinson, PhD; Guillermo Campillo; Moderator: Marisela Trujillo, LMSW

En esta sesión, nos concentraremos en cómo la cultura afecta a las familias con una enfermedad crónica y cómo superar el estigma de un trastorno de hemorrágico para que no afecte a su hijo. Discutir cómo las parejas pueden trabajar juntos como un equipo y involucrar a la familia extendida como ayudantes. Al final de la sesión aprenderá técnicas sobre cómo trabajar más eficazmente juntos como una familia para hacer frente a los estresores de un trastorno de sangrado.

MP3

$10.00

$10.00

NHF12-212

A Taste of PEP: Parents Empowering Parents

Speakers: Jennifer Foster-Fausett, BSN, RN; Alex Lowe; Danna Merritt, MSW, LMSW

Come for a taste of PEP. This special session is designed to strengthen parents who have a child with a bleeding disorder. While addressing the physical and emotional issues related to raising a child with an inherited, complicated bleeding condition, participants strengthen their behavioral management and communication skills. The session is taught by a trained PEP team including a parent peer, nurse and social worker.

Audio CDs: 1

Audio CD

$12.00

$12.00

NHF12-104

Your Family, Our Future: Understanding the Role of Genetic Testing in Hemophilia

Speakers: Marion Koerper, MD; Diane Aschman MS; Barbara Konkle, MD; Moderators: Glenn Pierce, MD, PhD, Chief Medical Officer, Biogen Idec Hemophilia

This session introduceS an innovative partnership of the National Hemophilia Foundation (NHF), American Thrombosis and Hemostasis Network (ATHN), Puget Sound Blood Center (PSBC) and Biogen Idec Hemophilia, which offers free or low cost genetic testing and analysis to patients and members of families with hemophilia while advancing scientific research of genetics and hemophilia. The founding partners and other representatives of the community participate in an interactive panel discussion, provide an overview of genetic testing and its value, as well as present details about the new program and how it can benefit patients, carriers, and their families now and for generations to come.

Audio CDs: 1

Audio CD

$12.00

$12.00

NHF12-201

Oral Presentations from the Top Research Poster Abstracts

MP3

$10.00

$10.00

Subtotal

$54.00