It’s clear the National Hemophilia Foundation is adept at creating meaningful connections – including its relationships with industry partners.
“We’re incredibly grateful, not only for partnership opportunities, but also for the relationships that exist with these brands and their teams,” said Katie Cooper, NHF senior director of stakeholder relations. “Their support has been unwavering, and their ability to connect with us, human to human, is what allows us to best serve the community.” These partners are simply “really amazing people,” she said, who enjoy learning from community members and using that knowledge to drive internal strategies.
The best part is that the admiration goes both ways.
Jane Cavanaugh Smith, head of U.S. public affairs and patient advocacy for rare blood disorders at Sanofi, said the company is thrilled to celebrate NHF’s legacy of education and advocacy as the exclusive 75th anniversary sponsor of BDC 2023. It all stems from a shared mission between the two organizations, including an eye toward health equity and scientific innovation. “Sanofi is dedicated to chasing the miracles of science to improve people’s lives,” she said. This year, in addition to hosting sessions, the company’s fair exhibit hall theme is “Community Lifts Us Up.” At the Sanofi booth, patient ambassadors will be available to speak with attendees about their experience on Sanofi hemophilia-approved products, and there will be interactive educational games and prizes. The Patient Support Services team and Community Education and Relations (“CoRe”) managers will also be present to answer questions, and Sanofi will launch “HEM sessions,” an album of seven original songs inspired by people living with hemophilia.
“Our goal is really to listen, act and lead for the community,” said Cavanaugh Smith, who was introduced to NHF 30 years ago as the mother to a son with hemophilia, and is attending BDC for the 28th time. “The bleeding disorders community – especially for a rare disease community – is incredibly strong and inspiring…. The whole energy of BDC is unlike anything else, and the team at Sanofi leaves motivated to work for patients and their care partners harder than ever.”
At Genentech, Runjhun Srivastava, marketing director, rare blood disorders, and Gina Truslow, senior manager, patient advocacy relations, note NHF’s tireless efforts toward advancing, education and advocacy on many fronts. This includes access and policy, the National Research Blueprint, and local chapter support for patient education and community engagement. “NHF has been instrumental in empowering the community, and we are grateful for their continued commitment to the cause,” Truslow said. There’s been “exceptional and all-around partnership,” for example, in the space of health equity over the past few years, Srivastava said. This extends to members of Genentech’s rare blood disorders medical team being part of the State of the Science Working Groups, which provided “a clear opportunity for our medical team to gain a better understanding of the top research interests needed in the community regarding healthcare disparities and underrepresented and marginalized groups,” she said. At this year’s BDC, in addition to the educational symposium offering, Genentech will present art generated by AI, based on interviews with lived experience experts.
Visitors to the Genentech booth will have the opportunity to make their own take-home AI art, too.
“At Genentech, we’ve always strived to be a good listener and to be responsive to community needs,” Truslow said. “Having a partner with a strong vision, that puts the hemophilia and bleeding disorders community at the heart of all initiatives, serves to shape and bolster our efforts.” Srivastava also lauds NHF’s ability to bring stakeholders together for the greatest impact.
Brad Schoenfeld, senior director, advocacy and professional relations, rare disease North America at Pfizer, said the hemophilia team adopted the phrase “we’re listening,” some time back, “and still to this day, I’m really proud to see the essence of it rings true.” Much of the education and resources available from Pfizer have been derived from conversations with, and truly listening to, the community towards need areas; the Friday morning breakfast symposium topic, “How to Approach Shared Decision Making with your Healthcare Team in an Evolving Hemophilia Treatment Landscape,” is a prime example.
“Shared decision making has been practiced,” he said. “But given the current treatment landscape – in terms of product options today and what the potential is for new therapies in the future – it’s getting a renewed look within the community,” he said. “Partnering with individuals and families affected by hemophilia, along with chapters and other advocacy groups, has helped to bring a patient-first approach towards organizational collaboration and resource development.”
This year, Pfizer will pay tribute to NHF and celebrate the 75th anniversary at its exhibit hall booth. “We’re proud to have had an opportunity to play a role in their historic timeline,” Schoenfeld said. Consider Pfizer’s support of the Steps for Living platform launch in 2011, developed in collaboration between the two organizations. Visitors to Pfizer’s exhibit will have the ability to celebrate the anniversary by participating in a 360-degree photo booth, and share their sentiments, as well. Other community partnership efforts with Pfizer include support for females (see www.HerHemophilia.com); ongoing support of the chapter networking hour at BDC; and the continued development and delivery of “Community Connections” educational programs by Pfizer’s Patient Affairs Liaison (PAL) team. NHF has done a great job, he said, working hand-in-hand with Pfizer to understand the priorities of the community and their organization.
“NHF continues to have a strong foundation and strategic vision towards influencing positive health outcomes. When Pfizer considers rare disease communities, NHF and its chapter network is a best practice model; they’re continuing to carry the torch.” ■