If you ask Dawn Rotellini, the work of the National Bleeding Disorders Foundation (NBDF) isn’t done until every person in the world with an inheritable blood or bleeding disorder has access to treatment and care.
Over the past 75 years, NBDF has established a nationwide network of chapters and treatment centers to provide education and services to people with bleeding disorders. The foundation’s Medical and Scientific Advisory Council is renowned globally for its recommendations and advisories on research and treatment.
“We recognized that we could do more,” says Rotellini, NBDF’s chief operating officer. “Why would we not share the things we’ve learned with countries and organizations that are in a stage where they’re ready to go to the next step?”
The World Federation of Hemophilia Twinning Program provides just such an opportunity to make a global impact. From its 152 national member organizations, WFH pairs a developed group with a developing one to build capacity and sustainability and exchange knowledge.
NBDF has participated in three twinning programs since 2013, partnering with developing bleeding disorders organizations in Nigeria, India, and Kosovo.
Rotellini is quick to point out that these twinning arrangements are not one-way streets where the developed organization has all the answers.
“What’s key is going into twinning with an open mind,” she says. “You’re going to learn how to serve your own community better, even as the developed organization, because you’ll learn things and different approaches that you never thought of before.”
Kristi Harvey-Simi, who is senior director of chapter training and advancement at NBDF, agrees about both sides benefiting from the program. She is involved in NBDF’s current twinning program in Kosovo.
“I personally have learned so much that I have brought back, and it has really changed my perspective on how I do my job and how I work with chapters in the United States,” Harvey-Simi says.
How Twins Are Paired
The twinning program is a two- to four-year collaborative partnership designed to meet developing (or emerging) organizations where they are and pair them with developed organizations. “The objective of the program is to help emerging patient organizations strengthen their organization and improve their services to patients and their families,” Rotellini says.
On an annual cycle, regional managers in the World Federation of Hemophilia determine whether any member organizations near them could benefit from a twin. In some cases, a new organization might need help in becoming a WFH member, “and that opens the door for so many things, like humanitarian aid and twinning programs,” says Rotellini, who serves on the WFH board in addition to her role at NBDF.
If a developed organization seems to be a good fit, it is encouraged to apply to be a twin. A WFH committee then scores both groups for their suitability for a partnership, and an assessment process begins, including WFH-funded site visits.
“You sit down together to see: Are our goals aligned? Does this make sense? Is the established partner the right partner? Is the emerging partner in a place where they are ready to do that cooperative planning together?” Rotellini says.
NBDF and Its Three Twins
When the Haemophilia Foundation of Nigeria (HFN) was established, for example, the nongovernmental organization wanted to set up a treatment center, so it made sense for WFH to create a four-year twin between HFN and NBDF in 2013, given NBDF’s expertise in medical programs and information.
Similarly, the Kosovo Hemophilia Foundation (KOHA F) is very early in its development, so WFH believed twinning with NBDF would be of great help because of its robust organizational and educational structure. Each year during the four-year program from 2023 to 2026, NBDF will report to WFH on how KOHA F is doing.
Last fall, KOHA F co-founder and President Elmedina Kukaj came to NBDF’s Chapter Leadership Seminar in Seattle. “She was able to speak to the executive directors of the chapters in the United States and share her experience of starting an organization, some of the access-to-care issues she has had to deal with,” Harvey-Simi says.
Hemophilia Federation India (HFI), by contrast, was 92 chapters strong but wanted to build its group of young adult members. Because of the demonstrated success of its National Youth Leadership Institute, NBDF was a natural pair for HFI in 2017.
Through the two-year youth program pilot with HFI, NBDF picked up a few ideas.
“How were they covering such a gigantic country like India? How were they getting so many youths involved? They had regional youth leaders throughout the country, and then they brought them all in for a national youth congress, which we had never done before,” Rotellini says.
“I believe if you do it right, you go in as a partner and not a teacher,” she continues. “You assess: What are your strengths? What are your weaknesses? Where are the opportunities? You help them prioritize their needs—not what you think they should do, but what they believe they want to do—and then you partner together to bring those resources.”
Creating Lasting Change
With the twinning program being a multiyear effort, there is time to generate incremental yet meaningful change.
Rotellini recalls seeing the difference from her initial visit to Kosovo in 2019.
“When I first went in for the original assessment, I met 5-year-olds who already had had such bad joint bleeds that they couldn’t walk anymore. Parents were carrying them into the clinic,” she says. “When we came back, after they got access to humanitarian aid donations of treatment, those same 5-year-olds were 8-year-olds, and they were running up and down the hall, and they were going to school, and they were living their lives.”
Despite this promising progress, the work isn’t done. The twin organizations have cultivated an awareness of bleeding disorders in Kosovo, but prophylaxis remains unavailable to adults in the country—something NBDF is helping KOHA F to change.
“Opening their eyes to understanding the disease of hemophilia better will help them also take care of themselves better, and it makes them feel more empowered to be able to advocate for better access to treatment and care,” Rotellini says. “Those are some of the lessons learned that will carry on well beyond our time there, when the twinning is over.”