Member and Community Relations Update
Reception for National Youth Leadership Institute (NYLI) at BDC 2024
by Karen Bowe-Hause, Director of Member and Community Relations
The Hemophilia Alliance sponsored and planned the program for the NYLI meeting at NBDF’s Bleeding Disorder Conference in August. The speakers represented a variety of clinical and non-clinical positions at HTCs. The goal was to help NYLI attendees understand that they can find engaging and rewarding careers in the health care space that are both within and outside the traditional clinical roles.
The National Youth Leadership Institute (NYLI) provides young people (18-24 years old) in the bleeding disorders community with leadership opportunities to encourage personal growth, effect change, and positively influence others. NYLI is a two-year NBDF program designed to assist young people from the bleeding disorders community in becoming well-trained, recognized leaders. In addition, NYLI provides an amazing opportunity for youth to learn and share experiences of living with a bleeding disorder.
The Hemophilia Alliance would like to thank the HTC staff members who led the discussions at this session and send a special thank you to the wonderful group of young adults who shared their time with us:
- Doris Quon, MD, PhD, Orthopaedic Hemophilia Treatment Center, Los Angeles, CA
- Emily Bisson, APRN, CPNP-PCN, Dartmouth-Hitchcock Hemophilia and Thrombosis Center, Lebanon, NH
- Penni Smith, RN, Utah Center for Bleeding and Clotting Disorders – Intermountain, Salt Lake City, UT
- Jennifer Borrillo, MSW, LCSW, MBA – Senior Vice President of Member & Community Relations, Hemophilia Alliance (former Program Manager, Louisiana Center for Bleeding and Clotting Disorders – Tulane, New Orleans, LA)
- Jennifer Anders, Manager of Data and Analytics, Hemophilia Alliance
Save the Date for the 27th Annual Linda Gammage Social Worker Conference – Feb 27 – 28, 2025
by Jeff Amond, Director of Member & Community Relations
The Hemophilia Alliance is proud to announce the 27th Annual Linda Gammage Social Worker Conference is scheduled for February 27th and 28th in Austin, Texas. This is an in-person clinical conference specifically intended for Social Workers with direct clinical responsibility in the bleeding-disorders field. This two-day event will require a commitment of arrival on Wednesday February 26th and departing after 2 pm on Friday, February 28th, 2025. Travel expenses will be paid for by the Hemophilia Alliance. The Hemophilia Alliance will underwrite each participant’s air travel, transfers to and from the hotel, conference hotel accommodations (room and tax) and the group meal expenses. Qualified applicants will be chosen from the pool of applicants*. Information about applying will be sent out at a later date.
Each day of the conference will cover different topics:
- Day One, Trauma Informed Care: Advocating for a Culture of Harm Reduction and Healing, will build upon prior Linda Gammage Social Work Conference Content. In this session, participants will expand concepts of trauma to a macro level of practice. A Trauma Informed Care service approach acknowledges the widespread impact of trauma and adversity on those we serve, as well as ourselves and our colleagues. This session will focus on cultivating harm reduction and healing through attention to physical and emotional safety, trust and transparency, cultural responsivity, collaboration, and mutuality. Participants will consider impacts of toxic stress and be provided with strategies to support wellness and resilience.
- Speaker – Mandy Davis, PhD, LCSW, is a Professor of Practice at Portland State University’s School of Social Work and a licensed clinical social worker. She is the Director of Trauma Informed Oregon, a program advancing trauma informed care throughout organizations and systems through training, consultation, and implementation resources. Dr. Davis teaches and lectures on implementing trauma-informed care and trauma specific services. Her current interests include measuring change when organizations and systems implement the principles of trauma informed care, the impact of toxic stress on the workforce and intersectionality between equity work, resilience, and trauma informed care.
- Day Two, Artificial Intelligence (AI) 101 and Beyond: Shaping AI in Social Work and Bleeding Disorders Care. AI’s integration into social work unlocks many opportunities. This session will introduce the basics of artificial intelligence (AI), machine learning, and the ethical considerations surrounding these technologies. We will learn how AI is used in various fields, including social work and healthcare, and will explore its potential benefits and risks in our work. This session will provide a practical overview of AI’s role and impact and inspire ideas on how AI can be effectively and responsibly integrated into your practice. Using collaborative tools, participants will brainstorm, deconstruct different AI perspectives, encourage ethical reflection, and collectively imagine a future where AI is shaped to meet the needs of your profession and patients.
- Speaker – Dr. Sara E. Berger is a Senior Research Scientist at IBM research, specializing in applied technology ethics. She holds a BA in neuroscience from Macalester College and a PhD in systems and cognitive neuroscience from Northwestern University, with an emphasis in bioethics. With over 15 years of experience in pain neuroscience, she has explored psychological, neurological, and social aspects of pain perception and treatment, leveraging machine learning and AI to develop better neuromodulatory systems and measurements for pain. In 2021, MIT Tech Review named her a Visionary in its 35 Innovators Under 35 for Applying AI to improve pain care. Currently, she develops frameworks, methods, and tools to address ethical, legal, and societal issues in data and technology, including AI and neurotechnologies.
Also In This Issue…
Jeff Weighs In
Administration & Operations Update
- Fall Member Meeting Review
- Upcoming Meetings
Advocacy Update
- 340B Reform Legislation – Current Status and Predictions
Legal Update
- 340B Update – Contract Pharmacy Litigation and State Laws to Related Pharmacies and PBMs
- HHS Adopts Changes to the Uniform Grants Guidance
Notes From The Community
- YETI Reunion at the Bleeding Disorder Conference