NHF is now the National Bleeding Disorders Foundation.

NBDF: A New Name for a New Era

NHF is now the National Bleeding Disorders Foundation.
Author: Beth Howard

In 2023, as the foundation celebrated its 75th anniversary, an exciting new chapter begins.

The organization formerly known as the National Hemophilia Foundation, which has served generations of people with inheritable blood and bleeding disorders and their families, is now known as the National Bleeding Disorders Foundation. The organization’s website and educational materials also bear a new look and logo.

“When I came to the NHF, my perspective as a hematologist was that we take care of all blood and bleeding disorders — not just hemophilia but also von Willebrand disease, platelet disorders, and rare coagulation factor deficiencies,” says foundation CEO Leonard Valentino, M.D. “So, we wanted to make sure that people who live with, say, factor XIII deficiency could see themselves in the organization.”

“The community was consistently telling us that our name was not inclusive of disorders that we were currently serving,” adds Chief Operating Officer Dawn Rotellini. “We heard from many community members who hadn’t always realized that we served their bleeding disorder.”

In fact, in one case, it took more than six years from the time of diagnosis for one individual to learn that the foundation could help navigate treatment for their factor VII deficiency. “They were all alone and had no idea of the resources that were available,” Rotellini says.

“The goal of rebranding is to become more inclusive of the disorders that we are already providing services for so that we can reach more people with those disorders, and then potentially also expand our reach into other disease communities that we haven’t supported as well,” Valentino says.

Returning to Our Roots

The NHF was founded as the Hemophilia Association in 1948 by Robert and Betty Jane Henry, whose son, Lee, had hemophilia. They were moved to act by a sense of isolation and their frustration over the lack of research into the treatment of bleeding conditions.

“When it was incorporated, the organization was actually focused on blood disorders and related conditions,” Valentino says. “But in the 1980s, the group (known then as the National Hemophilia Foundation) became laser focused on hemophilia because of the HIV crisis and the rise of hepatitis C. Advocacy around the disease became paramount.”

From the late 1970s through the mid-1980s, about half of the people with hemophilia in the U.S. became infected with HIV through contaminated blood products, and thousands died. The hepatitis C virus was also transmitted through contaminated factor products. Before testing for the virus began in 1992, an estimated 44% of people with hemophilia had contracted hepatitis C.

The impact of these diseases on the inheritable blood and bleeding disorders community pervaded the next few decades. “Now, it’s clear that while we need to maintain that focus, we should return to focusing on other blood and bleeding disorders,” Valentino says.

Names Matter

The rebranding process evolved from strategic planning meetings that began a few years ago. Participants were asked to envision how the foundation should look in the immediate future and in 30 years.

“A few chapters had changed the name to say ‘bleeding disorders’ several years ago, and then we started to see more do it,” Rotellini says. “We decided this was the right time.”

The decision coincided with the beginning of the COVID-19 pandemic. So, over the course of several months, the organization held multiple virtual listening sessions, each with 10 to 15 stakeholders, including people with bleeding disorders, health care providers, chapter representatives, and industry partners.

Then, after the feedback was posted online, 900 additional comments were received. “What came through loud and clear was that people wanted us to be more inclusive,” Rotellini says.

Not everyone was sure of the new focus. Some people with hemophilia worried they might be left behind.

“Whenever there is a name change, there are people who feel as though maybe they are not going to be as supported,” Valentino says. “Those are the voices we want to hear and understand.”

Adds Rotellini, “We will still be dedicated to serving the communities that we’ve been serving, and that includes hemophilia. That is not going away.”

Bringing in the Pros

The foundation chose Merz Branding of Media, Pennsylvania, to facilitate the rebranding. The company, which has managed the process for other health organizations, talked to key foundation leadership and staff, the Board of Directors, and medical professionals.

Merz also sought input through one-on-one interviews and virtual focus groups with donors, policymakers, experts, and people living with inheritable blood and bleeding disorders. “We turned the telescope inside and out,” says Mary Kate Lo Conte, a firm partner.

With its findings, Merz began presenting a range of names and logos. “We reviewed feedback we received, and it crystallized into the name and logo we shared with stakeholders and then fine-tuned, which resulted in the final brand identity,” Lo Conte says.

The new logo also reflects the foundation’s big-tent approach. “It has a strong color palette, and there is a visual element to it — basically a circle of blood drops,” Lo Conte says. “The drops are in different colors to represent inclusivity.”

The circular design reflects the “power up” button on digital devices. The meaning: “The organization is only getting stronger and better,” she says.

The response has been positive. “We’ve gotten really good feedback,” Lo Conte says. “Within the organization, people are saying things like, ‘Every time I see it, I like it more,’ which is fabulous to hear.”

The new name could pose a challenge when the organization is lobbying Congress. However, Rotellini believes the foundation is well-established on the Hill and elsewhere and can weather any potential confusion.

“We plan to use the phrase ‘formerly known as National Hemophilia Foundation’ for about a year,” she says. “I’m not too concerned about it, but communication will be key.”

New Opportunities to Serve

The new look, name, and focus are just the beginning, says Rotellini, who sees the rebranding effort as a work in progress. As the rebranding  is rolled out, the foundation plans to conduct a landscape analysis.

“We need to know what is out there and what blood and bleeding conditions are not currently being served in any way,” Rotellini says. “If there is a condition that has no organization, but someone is doing patient advocacy, we will look to partner with them. It’s in communities that have no educational resources, materials, or training where we will potentially see expansion down the line. However, there’s no intention to take over what another organization already does very well in their community.”

“Rebranding represents an opportunity for adding voices,” Valentino says. “You are always stronger when you speak with one voice. And you’re stronger when you have more voices that are speaking the same way.”