Bleeding Disorders Conference 2026
Day 1: The Power of Partnerships
The Power of Partnerships
The bleeding disorders community is made up of many voices, perspectives and experiences. Newly diagnosed families, people who have been managing their disorders for years, medical professionals, chapter leaders and volunteers all come to the National Bleeding Disorders Foundation's (NBDF) Bleeding Disorders Conference each year to connect with each other, learn from each other, and turn shared experiences into collective action.
The conference, which kicked off Thursday, August 13th in Orlando, Florida, offers three days of educational sessions for people with bleeding disorders, chapters leaders, and medical providers – the hematologists, nurses, physical therapists and social workers who care for the community. It is the only conference of its kind that brings both people with bleeding disorders and their care team together.
Convening in a place where you are surrounded by people who share your lived experience is the north star for the conference. This is especially important for families who are newly diagnosed. Bleeding disorders are rare, and the experience can feel overwhelming to people who are unfamiliar with managing the condition. The first day of the conference offers a great deal of support for those families, with a welcome session for new attendees, and three separate sessions on hemophilia, von Willebrand disease, and rare factor disorders.
Finding Connections
NBDF’s Connections for Learning program brought about 59 people to the conference, and tailors their experience so they gain a deeper understanding of their bleeding disorder as well as opportunities to meet and bond with others who are equally new to the community. The families and individuals met on Thursday for the Connections for Learning welcome session, where they were able to meet in person for the first time and prep themselves for the day ahead.
Megan Lucero applied for the grant for her family. Her daughter Hailey has VWD, and she wanted to learn more about her daughter’s condition so she could support her in managing her VWD.
The Luceros have six children, she said, and expenses are a large consideration for everything they do, so the support of the Connections for Learning grant was critical.
“The most important thing is to show Hailey that she’s not alone.”
Partnerships Without Borders
NBDF has also partnered with WFH for a unique opportunity to support people living with bleeding disorder outside the United States.
For five years, NBDF has partnered with the Coalition of the Americas, a group of patient advocacy organizations in the Americas, and Hemophilia of Georgia, with the goal of creating and implementing training opportunities for leaders across the Americas through a scholarship program that connects women leaders from different countries across the Americas with the conference.
“The idea was not only to provide them with the opportunity to participate in the Bleeding Disorders Conference, but also to continue working with each of them afterward through specific technical follow-up and support, and eventually to provide funding for the projects they developed,” said Antonio Gomez Cavalini, Strategic Initiatives & Partnership Manager.
“Over the past five years, 22 women have participated in the program. Each participant is invited to develop and present a project focused on women and addressing a specific need or opportunity in her country,” said Amanda Prito del Pino Mouro, the program coordinator for the initiative.
This approach means that the participants are highly attuned to what they learn at the conference and what they can take back to their own countries. “It goes beyond participation,” said Mouro. “It empowers women to transform knowledge, inspiration, and connections into concrete action within their communities.” It is the kind of grassroots energy that can make a real difference in the lives of the women with bleeding disorder who have little access to specialized treatment.
“I’ve seen women with bleeding disorders in Guyana hear information about their health for the very first time, seen women living in extremely remote areas of Panama finally registered as patients, gaining access to healthcare and treatment where previously there was none, and seen hundreds of women take part in workshops in Uruguay, Paraguay, Venezuela, Costa Rica, Chile, and other countries across the region,” Mouro said. “Step by step, they are turning knowledge into action and creating meaningful, lasting change in their countries.”
Expanding Access Through Partnership
Many people with bleeding disorders also attend with their chapter. The Mary M. Gooley Hemophilia Center, a hemophilia treatment center in Rochester, NY, brought 10 families to the conference so they could experience the education and support that NBDF’s conference provides.
“A person can get a year’s worth of education at one Bleeding Disorders Conference,” said Tom Wilmarth, CEO of Mary Gooley. “We have always brought a few people to the Bleeding Disorders Conference, but this year we partnered with NBDF and were able to bring ten families, which is the most we have ever brought,” he said. “It’s a mix of families who are newly diagnosed and those who have been living with their bleeding disorder for many years.”
Many Hearts, One Beat
Nobody in the bleeding disorders community is alone, Phil Gattone, M.Ed, president and CEO of the National Bleeding Disorders Foundation (NBDF) said in his remarks at the Bleeding Disorders Conference Opening Session, held Thursday night.
But rather, it is through partnerships – with chapters, with HTCs, and with NBDF – that the community achieves progress. “Imagine, a single heartbeat,” said Dawn Rotellini, COO of NBDF. “Which goes on to mix with other beats, coming an increasingly complex rhythm.” This metaphor, of the hearts of the community working together, was a thread that wound through the opening session, stressing the partnerships and collaboration that are necessary to allow the community to prosper.
The Community's Voice
Sue Hartman, President of the NBDF Board of Directors, stressed that the board of NBDF is grounded in the voice of the community.
“We are people with bleeding disorders, partners, caregivers, and medical professionals,” she said. “We are there to make sure the voice of the community is heard, and that their priorities become the priorities of NBDF,” she said.
A Network of Support
Phil brought many partners and collaborators to the stage to illustrate the theme of partnership. Sue Lerch, executive director of Hemophilia of Michigan, and Alice Cakebread, of the University of Michigan Hemophilia Treatment Center, were there to tell the story of Seth Furr, a young man with hemophilia who was adopted from China when he was around 12 years old. His adoptive mother lives with von Willebrand disease, so she was already connected with the chapter.
She knew that he would receive good care through the Michigan HTC. He became first a camper and then a camp counselor at Camp Bald Eagle, HFM’s seven-week bleeding disorders camp, where he learned leadership skills, and eventually to NBDF’s National Youth Leadership Institute, where he is currently in his first year of the program. “It’s really all of these organizations working together that allow a young man like Seth to thrive,” Cakebread says. “The HTC provides the medical care, the chapter provides the camp and the local programming, and NBDF supports the chapter and has national programs. None of us can exist without the other.”
The intertwined objectives of NBDF, the chapter networks, and the HTCs can make great strides to improving the lives of people with bleeding disorders, said Gattone. But none of the organizations can do it alone. He announced that finding undiagnosed people with bleeding disorders – people with rare bleeding disorders and women and girls with undiagnosed bleeding disorders, would be a key priority in the years ahead.
“There are too many families searching for connection,” he said. “Too many women and girls suffering without a diagnosis. And this is too important an issue for one person, or one chapter, or one organization to do alone. But all of us, working together with one voice, with one heartbeat, we can change these people’s live for the better.”
The Bleeding Disorders Conference brings together patients, families, and health care professionals for three days of insightful educational sessions, valuable networking opportunities, and a dynamic exhibit hall featuring leading pharmaceutical partners, organizations, and research poster abstracts.
The National Bleeding Disorders Foundation (NBDF) is dedicated to finding cures for inheritable blood and bleeding disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy, enabling people and families to thrive.
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