Notes From The Community
YETI Reunion at the Bleeding Disorder Conference
by Madonna McGuire-Smith, Executive Director PNWBD
On Thursday, September 12, about 75 people gathered at the Bleeding Disorders Conference in Atlanta, GA for a Youth Effectively Transitioning to Independence (YETI) reunion event. All attendees were given a chance to mark their place on a US map with a butterfly needle – such a unique opportunity enjoyed by all! The gathering was a great opportunity for people to reconnect that have attended YETI previously and for those who wanted to learn more about YETI so they can attend in the future. It was great to see HTC staff, bleeding disorder organization staff and some of our previous participants. It’s wonderful that The Hemophilia Alliance has been such a strong supporter of the YETI reunion both this year and last year!
The YETI Conference is a national event held at a camp nestled in the forest just outside of Portland, Oregon, designed to support the development of bleeding disorder-specific teen programming. This weekend-long experiential train-the-trainer program brings together Hemophilia Treatment Centers (HTCs), local bleeding disorder organizations, and community members.
The conference is divided into two tracks: a teen track and an adult track. In the adult track, HTC staff and local organization leaders experience the teen program firsthand, pausing throughout to discuss best practices for creating effective and safe programs. Meanwhile, the teen track offers participants the chance to connect with peers from across the country, explore leadership opportunities, and learn how to develop similar programs in their home states.
Throughout the weekend, both tracks come together to collaborate and learn from one another. Since 2017, YETI has trained 115 bleeding disorder entities nationwide.
YETI 2025 will be February 20 – 23. For more information please go to https://pnwbd.org/yeti/
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
MCR Update
- Reception for National Youth Leadership Institute (NYLI) at BDC 2024