Dawn Rotellini vividly remembers her first trip to Kosovo in 2019. The National Hemophilia Foundation’s chief operating officer, who is also a World Federation of Hemophilia (WFH) board member, was invited by the WFH to visit and assess the newly formed Kosovo Hemophilia Foundation, which was applying to join the WFH as an associate national member organization.
“As part of that initial assessment visit, I attended a clinic at the pediatrics center, and while I was there, parents were carrying in their 3-, 4-, and 5-year-olds because these children couldn’t walk,” Rotellini says. “They had already had so many bleeds, and without any treatment, they were showing signs of disability.”
Seeing her loved ones suffer from lack of treatment is what motivated Kosovo Hemophilia Foundation (KOHA F) co-founder and President Elmedina Kukaj to start a foundation for people in Kosovo with hemophilia and other bleeding disorders back in 2018, when she was just 19 years old.
“I have someone in my family with hemophilia, and I also lost someone close to me from the disease,” Kukaj says. “Watching them in pain is what pushed me to want to help them, as well as others.”
Kukaj says she wrote to several organizations around the world to ask for help, and the first reply came from NHF. “At the time, I didn’t know the meaning or the role of an NGO [nongovernmental organization]. I only knew that my family member was in so much pain that he wished to die. NHF connected me to WFH, and soon after that we had a visit from WFH, and that’s how we decided to start an organization.”
An Ideal Match
Today, five years after that first correspondence, NHF and KOHA F are partners in the WFH Twinning Program, a four-year collaborative partnership between emerging and established bleeding disorders organizations and treatment centers.
Over the past 20 years, the WFH Twinning program has forged 265 partnerships across 119 countries, helping to support 97 hemophilia organizations and 162 hemophilia treatment centers.
In September 2022, Rotellini and Kristi Harvey-Simi, NHF’s senior director of chapter training and advancement, traveled to Kosovo for a twinning program assessment. Kukaj says she requested that her organization be matched with NHF because of their prior relationship.
“The countries of Kosovo and the United States have a phenomenal relationship, and I think that’s another reason why WFH thought it would be good for our organizations to twin,” Rotellini adds.
Over the next four years, NHF will share its knowledge and skills with KOHA F in areas such as patient education, outreach, fundraising, and other aspects of operating a successful patient organization.
Harvey-Simi says NHF plans to bring Kukaj to the U.S. in November to attend the organization’s annual Chapter Leadership Seminar. “We want Elmedina to learn as much as she can from her peers here in the U.S. about things like fundraising, program development, and building a board,” Harvey-Simi says, “but in addition, it will be great for our chapter leaders to hear from Elmedina, because her story is so inspirational.”
Data Collection a Top Priority
During the twinning assessment, Rotellini and Harvey-Simi spent four days meeting with Kukaj and the other board members to discuss the newly formed organization’s goals.
“What is so amazing about Elmedina is that long before we even found out if we were accepted, she just started on the list of goals we had mapped out. She’s a very organized and energized person, and between the time we first met her in 2019 and our twinning assessment in 2022, she had recruited 15 medical students as volunteers,” Rotellini says.
One of the immediate goals is to establish a registry to identify all patients with hemophilia A and B in Kosovo. “The No. 1 goal, of course, is treatment, but it’s very difficult to go to the government and say, ‘We need more access to treatment, please purchase more clotting factor agents,’ when you can’t tell them how many people you have who are diagnosed and how many people you anticipate are undiagnosed,” Rotellini says.
The data collection process will also include a tool called PROBE, which stands for Patient Reported Outcomes, Burdens, and Experiences. The questionnaire will enable the organization to capture not just the typical data that a clinic might track, “but also those emotional and lived experiences, which tell us more about what having hemophilia really means for the person,” Rotellini says.
“By using PROBE in emerging countries like Kosovo, we can actually follow where people were at when they had no access to treatment, where they were when they had very little access, and then where they were when access got better,” she adds.
The Power of Treatment
Once the Kosovo foundation became a national member organization, it was immediately eligible for humanitarian aid through the WFH, which means children in Kosovo have started to get proper treatment for their disease.
“In the past, people with hemophilia in Kosovo were mainly treated with blood transfusions, and they had to travel to Pristina, the capital city, and then wait all day for treatment, missing school or work,” Kukaj says. “But these blood transfusions were also not effective. Now, because of our cooperation with WFH and NHF, patients are getting treated and they are improving.”
Rotellini says that improvement became abundantly clear to her in September 2022 when she went back to the clinic she had visited in 2019.
“Three years later, I saw those same children I had seen on my first visit, but now, because of humanitarian aid, these kids were running up and down the halls. Their parents were so happy that their kids could go to school and make friends and do all the things they couldn’t do without proper treatment,” Rotellini says.
That experience, she says, reminded her that “while we may be a national foundation for people with hemophilia and other bleeding disorders in the United States, our work isn’t done until everyone in the world has access to care and treatment.”