| | | NHF12-100 | | Opening Session Speakers: Val D. Bias, NHF CEO Technology has made it possible to genotype, or determine genetic mutations, for people with hemophilia A or B. Find out about NHF's genotyping initiative that is set to launch in 2013. Find out where NHF and its chapter network are headed, and how you can be a part of something bigger than yourself. | | MP3 | | $10.00 | | $10.00 | |
| | | NHF12-219 | | Creative SW Programming Speakers: Peg Geary, MA, MBA, MPH, LCSW, CCM; Elissa Kraus, MS, CGC; Don Molter, MEd; David Rushlow, LMSW; Moderators: Peg Geary, MA, MBA, MPH, LCSW, CCM Understanding Hemophilia Genetics: How Can We Help? Social Workers are given an introduction to basic hemophilia genetics, including pattern of inheritance, risk determination, and molecular testing and analysis. Using case scenarios we discuss the implications of DNA testing on the patient and family, and the complex ethical issues surrounding the disclosure of results. We explore the psychosocial dynamics of the burden and consequences of genetic knowledge. Participants identify and explore ways to assist patients and families cope with the all-too-common reactions of guilt, shame and blame —— Career Counseling for Adolescence: During this session we focus on the role and importance of career counselors within the bleeding disorder community. We discuss advocacy skills for parents and students, the differences between Healthcare Plans, IEPs and Section 504 plans and when each plan should be appropriately used. Learn about the importance of early career testing, scholarship searches, and school/community involvement activities. —— Utilizing Telemedicine in Rural Communities: This session focuses on implementing a telemedicine program at your HTC. We discuss funding, the protocols and technology necessary to run such a program. Learn how this innovative technology can improve access to healthcare and quality of care for the rural patient population. You also learn how to assess client readiness and delivery of social work intervention techniques using telemedicine as a therapy tool. Audio CDs: 2 | | Audio CD | | $24.00 | | $24.00 | |
| | | NHF12-102 | | I Don’t Need a Support Group, I have Facebook! Pros & Cons of a Social Media Support System Speakers: Edward Kuebler, LCSW; Sonji Wilkes; Tom Joseph; January W. Payne; Christie VanHorne, MEd, MPH Social media offers the opportunity to “meet” others with your rare disease, to relay experiences and search for answers for those difficult questions. The potential is endless! But how much is too much? The collection of personal data is a real danger. While it is important to decipher inaccurate information from unverifiable sources, social media is the reality of our time. We discuss the role social media plays in the bleeding disorders community, the importance of privacy and the benefits of being online. | | MP3 | | $10.00 | | $10.00 | |
