Hemo Alliance Newsletters

Notes from the Community, October 2024

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

Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jennifer Borrillo, MSW, LCSW, MBA borrillo@hemoalliance.org 504-376-5282
Heidi Lane, PT, DPT, PCS heidi@hemoalliance.org 435-659-1230
Jeff Amond amond@hemoalliance.org 608-206-3132
Jennifer Anders jennifer@hemoalliance.org 954-218-8509
Angela Blue, MBA angela@hemoalliance.org 651-308-3902
Karen Bowe-Hause karen@hemoalliance.org 717-571-0266
Zack Duffy zack@hemoalliance.org 503-804-2581
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Kiet Huynh kiet@hemoalliance.org 917-362-1382
Elizabeth Karan elizabeth@karanlegalgroup.com 612-202-3240
Kollet Koulianos, MBA kollet@hemoalliance.org 309-397-8431
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestreich, Pharm.D., MPA george@gloetal.com 573-230-7075
Theresa Parker theresa@hemoalliance.org 727-688-2568
Mark Plencner mark@hemoalliance.org 701-318-2910
Ellen Riker eriker@artemispolicygroup.com 202-257-6670