Final Edition
by Joe Pugliese, President and CEO

Dear Bleeding Disorders Community,

It has been, my wife, Karen and my privilege and pleasure to be part of this community since 1977. It is beyond remarkable how much this community has endured, evolved, and grown over this time. Since this is my final notes from Joe, I will do a brief review of what the Hemophilia Alliance has achieved under my watch, but I remind you there are hundreds of people who made all of this possible.

The story started with my serendipitous introduction to this community in 1977 when I went to work for Armour Pharmaceutical. It was there through a series of career moves and even more changes in ownership that I was able to come to really know every corner of this community. Naturally that started with the patients and the clinicians who manage their care. While I worked for the company, Monoclate, Mononine, Humate-P, and Stimate were brought to the market. Since 2004, Armour became known as CSL Behring and its commitment to innovation did not end with my departure. Idelvion and Hemgenix are the most obvious examples of that continuing commitment.

During my 27 years with Armour/RPR/Centeon/Aventis Behring, the company funded many innovative approaches for reaching people with hemophilia, supporting patient education programs, like Raising a Child with Hemophilia, spearheaded by Laurie Kelley who unlike today, was unknown to the hemophilia community. We also funded Renne Paper’s book on living with von Willebrand disease and initiated Getting in the Game and the Linda Gammage Social Workers conference, both are enduring programs. My thanks to all the people I worked with who empowered us to think about innovative ways to serve the community. I sorely miss all the wonderful people I worked with, many of whom are still on the job.

I think all of those experiences uniquely qualified me to lead the Hemophilia Alliance starting in 2006 and building it into the organization it is today. It also took the tremendous support I received from the founding Board of Directors, the Board members who followed and all my colleagues at the Alliance. Particular thanks go to Amy Shapiro, Trish Dominic, and Bill Sparrow, all of whom built incredibly successful organizations of their own and were instrumental in helping the Hemophilia Alliance get started, always the hardest part of any new venture.

I would like to highlight some of the Alliance’s biggest accomplishments.

• In 2023, we have 105 participating members. We started with just one.
• The Alliance team includes 11 full-time employees and 7 contractors, who have over 300 years of experience in the bleeding disorders community and as I like to say, “box well above their weight.” If you need assistance think of them first.
• We created the independent but closely aligned, The Alliance Pharmacy (TAP), in 2010. TAP today provides critical distribution and pharmacy services to numerous members of the Alliance and like the Alliance, invests back into the community.
• The Hemophilia Alliance Foundation was created in 2013. The Foundation provides critical funding to chapters, regions and HTCs across the country providing funding.
• We funded the development of DDAVP NS in 2020 to meet a critical unmet need.
• Most recently we have funded critical education and training programs developed by our sister organizations, live NBDF’s MASAC meetings, HFA’s Mild Matter, and the Partners Physician Academy to name a few.
• We will be announcing a brand-new initiative in 2024 to help in screening and diagnosing patients in a timely manner.
• Through 2023, the Hemophilia Alliance and its foundation have given back to the community in excess of $25,000,000. We have made good on our promise to give back to the community.

There is still much to be done. I am confident that the Alliance, with my colleague Jeff Blake at the helm, will continue to grow and innovate. I won’t say goodbye. I will close the way I opened this letter; it has been a pleasure and a privilege. I wish you all a Merry Christmas and a Happy, Healthy, and Prosperous 2024 and beyond.