Rwanda strengthens hemophilia awareness and care amid growing calls for support

By Elias Hakizimana

As Rwanda joined the global community in marking World Hemophilia Day this April 18, 2025, the President of the Rwanda Fraternity Against Hemophilia (RFH), James Ndahayo, spoke to The Inspirer in an exclusive interview, highlighting both progress and persistent challenges in the fight against the rare bleeding disorder.

World Hemophilia Day is an annual observance, currently commemorated every year on April 17, dedicated to raising awareness and improving diagnosis and access to care for those living with hemophilia, a lifelong bleeding condition caused by a deficiency in blood clotting factors — primarily Factor VIII (hemophilia A) and Factor IX (hemophilia B).

“This is not just a day for commemoration,” said Ndahayo. “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.”

Hemophilia in Rwanda: From Misdiagnosis to National Registry

Ndahayo revealed that Rwanda has made commendable strides in recent years. Previously, hemophilia remained largely undiagnosed and misunderstood — even among health professionals.

“Three years ago, even some doctors were unaware of the condition. Today, we have a national registry of 115 confirmed patients, and many are now receiving proper treatment,” he said.

Treatment is made possible thanks to donations from the World Federation of Hemophilia, which supplies clotting factor medications free of charge. The organization has also been instrumental in training hematologists, a specialty still scarce in Rwanda.

“Although we have opened specialized clinics like the one at CHUB (University Teaching Hospital of Butare), we are still facing a critical shortage of hematologists — fewer than ten in the whole country,” Ndahayo noted.

Who is most affected?

Hemophilia is a genetic, non-communicable disease, passed down through generations — especially from mothers who carry the gene. Due to its link to the X chromosome, young boys are disproportionately affected.

“Boys inherit an X and a Y chromosome. If the X chromosome has the faulty gene, there’s no backup — and that’s when hemophilia manifests. Girls have two X chromosomes, so a healthy one can compensate if one is defective,” Ndahayo explained.

Bridging gaps: Awareness, Access, and Advocacy

RFH has stepped up nationwide advocacy, raising awareness in district and referral hospitals to ensure that both medical and administrative personnel can recognize and respond to hemophilia cases. Mobile outreach and the establishment of regional treatment centers are underway to bring services closer to those in rural areas.

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

He called on the government to increase support for advocacy, integrate hemophilia care into broader health programs, and help eliminate the stigma associated with the disease.

A call to partners, the public, and patients

Ndahayo emphasized that clotting factor replacement therapy remains very expensive and urged international partners and donors to continue their support. “These medications save lives, and without them, the outcomes are often fatal,” he stressed.

To the general public, Ndahayo sent a strong message of inclusion: “Hemophilia is not contagious. There is no need to isolate or stigmatize people with this condition. They deserve understanding and support like everyone else.”

He also encouraged anyone with symptoms such as prolonged bleeding, frequent nosebleeds, or joint swelling to seek testing. Currently, testing is available at CHUK, CHUB, and soon, Kibuye referral hospital will begin offering the service.

For those already diagnosed, he urged them to join the RFH community for support, education, and access to treatment.

Hope for a healthier future

“We want every person with hemophilia to live a full, productive life,” said Ndahayo. “With access to treatment and the right care, they can go back to school, work, and even participate in sports — just like anyone else.”

As Rwanda’s efforts intensify, World Hemophilia Day serves as a powerful reminder of the progress achieved — and the work still needed — to ensure that no one bleeds alone.

theinspirerpublications@gmail.com