By Elias Hakizimana.

As Rwanda joined the global community to commemorate World Hemophilia Day on April 18, 2025, stories of resilience, advocacy, and medical progress took center stage. From patients and caregivers to medical professionals, a united front is emerging to challenge the stigma and neglect long associated with the rare bleeding disorder.

World Hemophilia Day, observed annually on April 17, aims to raise global awareness and improve diagnosis and care for people living with hemophilia — a lifelong condition where the blood doesn’t clot properly due to a deficiency in clotting factors, mainly Factor VIII (hemophilia A) and Factor IX (hemophilia B).

A time for reflection and action

“This is not just a day for commemoration,” said James Ndahayo, President of the Rwanda Fraternity AgainstHemophilia (RFH), in an interview with The Inspirer. “It’s a call to action and reflection — a time to evaluate how far we’ve come and how far we still have to go.”

Ndahayo highlighted that Rwanda has made notable progress. Once a condition misdiagnosed and misunderstood — even within the medical community — hemophilia is now formally recognized and included in national health programs.

“Three years ago, many doctors weren’t aware of hemophilia. Today, we have a national registry with 115 confirmed patients, and more people are getting proper treatment,” he said.

Much of this advancement is attributed to the support of the World Federation of Hemophilia, which donates expensive clotting factor medications and provides essential training for Rwanda’s small number of hematologists.

A mother’s journey: Three children, one diagnosis

Clémentine Mujawimana, a mother of four, has three of them living with hemophilia — now aged 19, 17, and 9. She recalls the fear and confusion she faced when they were first diagnosed.

“In the beginning, it was difficult to get treatment. All the parents would end up crying because we couldn’t access the medicine,” she shared.

Stigma was another battle. “Some family members thought our children were poisoned,” she said. “People would see my bleeding child and say cruel things. It was heartbreaking.”

Today, Clémentine credits the RFH and increased public education through radio and television for transforming both her life and public attitudes.

“We meet, talk, and support each other. I no longer feel alone,” she said. “Thanks to medication and awareness, things have changed. We are finding hope again.”

A patient’s perspective: Living with hemophilia for 25 years

Amos Nsengiyumva, a hemophilia A patient, echoed similar sentiments. “Five years ago, we had to send blood samples to France. Now we have testing machines in Rwanda. That’s a big step forward.”

Amos stressed the importance of community organization: “We now get more medicine because we are united. Being together has helped us push for what we need.”

He believes the current generation of children with hemophilia faces a much better future. “There’s hope now. Younger children aren’t suffering like we did.”

Who is most affected?

Hemophilia is a hereditary, non-communicable disorder that primarily affects males, due to its link to the X chromosome. Ndahayo explained: “Mothers carry the gene, but boys are more affected because they don’t have a second X chromosome to compensate.”

Girls can be carriers and sometimes experience milder symptoms, but it’s boys who suffer the most pronounced effects.

Medical insight: “We’ve come a long way”

Dr. Jean Pierre Mivumbi, a pediatrician at the University Teaching Hospital of Butare (CHUB) and a medical advisor for the Rwanda Hemophilia Foundation, has witnessed Rwanda’s progress firsthand.

“Twelve years ago, fewer than ten people in Rwanda even knew they had hemophilia. Testing was done in Europe or South Africa. Access to medication was almost non-existent,” he told The Inspirer.

“Now, we have 115 registered patients. It’s not enough — statistically, there could be over 1,600 in Rwanda — but it shows we’ve made significant strides.”

Dr. Mivumbi emphasized that early diagnosis is critical. “If a child bleeds excessively after circumcision, surgery, or childbirth, it’s important not to assume it’s witchcraft or poison. Go to a hospital and get tested. Early diagnosis makes all the difference.”

He also warned that while hemophilia is not curable, it is manageable. “We have medication available. We just need to reach the undiagnosed.”

Building an inclusive health system

RFH is expanding advocacy to regional hospitals, urging the integration of hemophilia care into national health strategies. A new clinic recently opened at CHUB, with others planned for rural areas.

“Awareness is our biggest weapon,” said Ndahayo. “Many people still don’t know what hemophilia is. We must change that.”

He urged international partners to continue supporting Rwanda with donations of life-saving medication, which remains out of reach for many families without aid.

A call for compassion

“To the public, hemophilia is not contagious,” Ndahayoemphasized. “There’s no need for stigma or fear. People with this condition need compassion and understanding.”

Testing is now available at CHUK, CHUB, King Faisal Hospital, and soon at Ruhengeri Hospital in Musanze. Anyone experiencing symptoms such as frequent nosebleeds, unexplained swelling, or prolonged bleeding after injury is urged to seek care.

Hope for the future

From parents like Clémentine to patients like Amos, and from doctors like Dr. Mivumbi to advocates like Ndahayo, a common theme resonates: hope.

“With expanding access to treatment, growing awareness, and stronger networks of support, Rwanda is moving closer to a future where living with hemophilia does not mean living in fear,” Ndahayo said. “We want every person with hemophilia to go back to school, to work, and even play sports — just like anyone else.”