Coming Together
by Joe Pugliese, President and CEO

The National Hemophilia Foundation’s, annual Bleeding Disorders Conference, (NHF, BDC) returned to pre-pandemic levels for crowds and interactions. Len Valentino, NHF President and CEO, and his team celebrated its 75th anniversary by introducing a NEW name and logo for the organization – National Bleeding Disorders Foundation. NBDF is to be applauded for a great meeting as it moves the bleeding disorder community into the future, by building on the success the organization has historically enjoyed.

The Hemophilia Alliance was well-represented at this meeting with Alliance Staff, Board Members and HTC Members attending events throughout the conference. Here are the highlights:

• Preconference meetings started on Wednesday, August 16, on state-based advocacy and public policy and access, which Alliance members attended and served in speaking roles.
• As usual, the Alliance hosted the annual chapter luncheon, and presented its 2022 Innovation Grants from the Hemophilia Alliance Foundation (HAF). HAF was established as an independent organization that receives a grant from the Hemophilia Alliance. We created a separate foundation to insure that there was a community wide board to oversee grants to Chapters, HTC s and regions. To learn more, visit the website at https://hemophiliaalliancefoundation.org/ Grant recipients for 2022 are:
Aging Together prepared by the Hemophilia Foundation of Michigan – presented by Susan Lerch, Executive Director, Hemophilia Foundation of Michigan
VainSim – Venous Access Infusion Simulator prepared by Orlando Health and Inspiration – presented by Keely DeGroot, Director, Innovation Design & Research, Orlando Health, Arnold Palmer Hospital for Children
Access to Care for Women and Bleeding Disorders prepared by CHES Foundation – presented by Connie Montgomery from the CHES Board of Directors
• Johanna Gray and I presented at the Fifth Annual Grifols Medical Preconference Symposium: Perspectives on the HTC Model and HTC sustainability.
• Jeff Blake represented the Alliance at numerous CCSC sessions throughout the conference.
• Thursday night, NBDF and the Alliance hosted a reception for the winners of the Wall of Walkers, recognizing the HTCs that raised the most funds for the Unite walk campaign.
• Friday morning, Alliance leaders met with Eric Stolte, President, and Alain Baumann, Executive Director, and numerous staff of the World Federation of Hemophilia (WFH) to review our past collaboration and discuss future opportunities. Sean Singh serves on the board of WFH USA.
• Also on Friday, Jeff Amond from the Alliance Team was a panelist at the BDC Session – Passion to Profession: Exploring Careers in Health Care. Each Panelist discussed their career in health care and what led them to a career in Bleeding Disorders.
• Saturday morning, I was pleased to attend the MASAC meeting. I presented on the value of the Alliance brings to the community and highlighted the upcoming Physician and Administrator meetings the Alliance was hosting. The Alliance is the sole outside sponsor the NBDF MASAC meeting. Kollet Koulianos, a new consultant on the Alliance team, presented later in the day on the ongoing challenges affecting patient access and what we are doing to address those issues.

I also want to recognize the reception for the National Youth Leadership Institute (NYLI) sponsored by the Hemophilia Alliance. 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. This event will be highlighted in the September Newsletter. It is a logical extension of the NBDF’s plans for the future.

Last but certainly not least, the recently renamed and expanded Members and Community Relations team members had some fun while at the Alliance Booth at BDC. Who wouldn’t look to this group for guidance on addressing challenges you face in your HTC or chapter!