One of the most meaningful parts of the Bleeding Disorders Conference was the chance for people to gather in spaces that reflected their identities and experiences. This year, NBDF hosted a series of intersectional sessions and networking hours that gave attendees the opportunity to sit together, share stories, and learn from one another. These gatherings honored the richness of our community while creating supportive spaces where everyone felt seen.
Spaces for Connection
Throughout the conference, dedicated sessions brought together African Americans, Muslim/Middle Eastern, LGBTQ+ individuals, people with rare platelet disorders, and those living with von Willebrand disease (VWD). Each group came together in an environment designed for open conversation, personal storytelling, and the chance to explore challenges and triumphs unique to their journeys. The sessions reminded everyone that while each experience is distinct, the power of community and solidarity is universal.
Networking Hours: Food, Friendship, and Fun
To build on the day’s conversations, NBDF hosted evening networking hours that blended snacks, short remarks, and creative activities. Conversations mingled with music as attendees deepened the connections made earlier and found new ways to celebrate one another.
At the Hispanic/Latin American Networking Hour, NBDF President and CEO Phil Gattone offered heartfelt words of welcome: “When you are part of this community, you are not alone—you are family. We care deeply about you, and we want to walk with you every step of the way.” His remarks captured the spirit of the event, where laughter, conversation, and cultural pride filled the room.
“Representation matters,” said ShaLinda Creer, who was attending Networking Hour: Black and African Americans: We Are Family. “Living in Las Vegas, and dealing with my son’s hemophilia journey, there’s not anyone like me. I have to advocate because he’s got hemophilia, he’s a young black boy and there’s so much that encompasses that.” These sessions, she said, “provided the family feel. That’s what keeps me coming back to the Bleeding Disorders Conference.”
The Ultra Rare Networking Hour brought together individuals and families who often feel isolated by the rarity of their conditions. Speakers reflected on the challenges of diagnosis and treatment, while patient advocates shared moving personal stories of resilience. One attendee spoke about growing up with severe factor XI deficiency and the life-changing impact of new treatments, while another shared her long path to a diagnosis of plasminogen deficiency. Their stories underscored the importance of innovation and the comfort of being among those who truly understand.
The VWD Networking Hour was celebratory with the theme, “Vibrant, Wonderful, and Determined.” Participants were encouraged to write their personal victories on a community board—moments that ranged from small daily wins to overcoming significant health challenges. The atmosphere was warm and wholehearted, celebrating compassion, courage, and daring.
A Shared Celebration of Belonging
These sessions and networking hours were more than meetings on a schedule—they were celebrations of belonging. “When you make a connection with someone who shares your experience, and you bring that knowledge and connection back to your community – there’s power in that,” said Karina Lopez, MPH, CHES, health access and strategic innovation program specialist at NBDF.
Whether through storytelling, food, or fun activities, each event highlighted the strength that comes from gathering together. Attendees left not only with new information and connections, but also with the reassurance that in this community, no one walks alone.
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