HoG Plays a Big Role in NHF Bleeding Disorders Conference
If you were not able to attend the National Hemophilia Foundation’s virtual 72nd Bleeding Disorders Conference, August 1-8, you can still register to view the presentations. More than 50 sessions for consumers and chapters are available through September 30. The healthcare professional sessions are not available.
The all-virtual event was a success. Hemophilia of Georgia was proud to play a role in the program. Be sure to check out the presentations from our staff:
- Practical Planning for Aging discusses planning for aging, illness and dying. Speakers Christi Humphrey, HoG, and Ayana Mangum Woods, End of Life Choices New York, spoke about how to cope with body changes, aging-specific issues, and legal aspects of living wills and planning.
- Faith and Bleeding Disorders, moderated by Christi Humphrey, featured an adult male who has severe hemophilia and an inhibitor and a mother of a child with severe hemophilia. The two discuss how their faith was affected by a bleeding disorder.
- Parent Partnership and Mental Health was led by our own Theresa Schaffer. She was joined by Kelly Baker, a parent of a child with a bleeding disorder. The two discussed effective communication styles and self-care during the pandemic.
- Navigating Virtual School at Home discussed potential challenges of transitioning to virtual school this upcoming school year. The program provided resources for curriculum, tutoring assistance, financial assistance for technology, and reading material. HoG’s Alayna Sipple co-presented with Kelly Baker, a parent of a child with a bleeding disorder.
Our team presented other programs that aren’t available online, including:
- Care Coordination for the Aging Bleeding Disorders Population – a presentation for nurses about the challenges of obtaining health services specifically for the aging population. HoG’s Jeff Cornett spoke about advocacy for elders with bleeding disorders, including the need to pass legislation so Medicare can increase payments for bleeding disorder medications in skilled nursing facilities. His co-presenter was Shanna Mattis, Emory Hemophilia Treatment Center.
- NHF Nurses Working Group Pre-conference Discussion on Novel Therapies discussed two case studies – one patient on Hemlibra who required as-needed factor replacement and one patient considering gene therapy. The panel included HoG’s Leigh Carpenter, Susan Knight of Children’s Hospital Los Angeles, Kathleen Schnur of Hemophilia Center of Western Pennsylvania, and Becky Garcia of Phoenix Children’s Hospital.
- Today’s Technology – HoG’s Penny Kumpf and Michael DeGrandpre of the Hemophilia Alliance covered nursing ethics and the dos and don’ts of today’s professional nurse.
Penny also gave the welcome address for the Georgia NHF Nurses Working Group Session and the Nurses Excellence presentation. Several HoG staff also served on the planning committee, including:
- Deniece Chevannes
- Penny Kumpf (chair of the Nurse Working Group)
- Christi Humphrey (member of the Social Work Working Group and the MASAC Pain Committee)