Since 28 years ago FAHEM has been building awareness about hemophilia while collaborating with key stakeholders to promote access to innovative treatments that improve patients’ quality of life

“My son ‘s diagnosis was 39 years ago. It was a difficult process because at that time the medicine was not as advanced as it is today. There was no family record and I knew nothing about the condition; however, I decided to learn about it to bring him the best care and support”. Said Haydée Benoit , founder of the Hemophilia Support Foundation (FAHEM), as she recalls her first encounter with hemophilia.

Hemophilia is a bleeding disorder that affects the blood’s ability to clot properly due to insufficient levels of clotting factors, the proteins that control bleeding. It is considered the most common rare disease, affecting 1 in every 10,000 people. Hemophilia is hereditary, meaning it is passed down through the genes of either parent.

According to the World Federation of Hemophilia, in 2023, 390,630 patients with various bleeding disorders were identified, with hemophilia being the most prevalent, accounting for 218,804 cases. In the Dominican Republic, 495 individuals were identified in the same year, based on the Federation’s latest Annual Global Survey.

The main symptoms include frequent bruising, bleeding into muscles and joints particularly knees, elbows, and ankles; spontaneous bleeding without an apparent cause, or prolonged bleeding after surgeries or accidents.

Since 1996, FAHEM has worked to raise awareness about this condition in the country. It has united 684 patients with hemophilia, fostering connections and sharing experiences. Including medical staff, caregivers, and families, the foundation’s reach impacts over 900 people.

Collaborative Efforts for Patients’ Benefit

Regular therapy administration aimed at preventing bleeding, known as prophylaxis, is the standard of care for hemophilia patients. Fendi Valdez, FAHEM’s president, explains that the foundation works closely with patients, families, and health authorities to facilitate access and maintain treatments that enhance the quality of life for those with this condition.

For example, FAHEM collaborates with the Ministry of Health’s High-Cost Medicines Unit to ensure that children with hemophilia can access available medications. Their data indicates that approximately 55 minors are part of this program at hospitals such as Robert Reid Cabral (Santo Domingo) and Dr. Arturo Grullón (Santiago de los Caballeros).

FAHEM also has access to four referral centers for adults and children, with two located in Santiago and two in Santo Domingo, in addition to satellite hospitals that provide care and refer patients to these centers. This network has enabled the identification of many of the 684 registered patients.

Although the NGO does not have a decision-making role within health authorities, its input is considered on matters related to hemophilia. FAHEM’s efforts have fostered collaboration with the World Federation of Hemophilia, the Ministry of Health, the National Health Service, the High-Cost Medicines Program, Health Risk Administrators (ARS), the Superintendence of Health and Labor Risks (SISALRIL), blood banks, and pharmaceutical laboratories, as well as relationships with national and international federations and NGOs.

FAHEM does not receive state subsidies. Its only income comes from support provided for specific projects or campaigns, but this assistance is not consistent throughout the year.

A Social Call to Action

Haydée Benoit, a symptomatic carrier, mother, and grandmother of people with hemophilia, her journey started in 1985 when her son was diagnosed with hemophilia while they were living in Toronto, Canada. Thanks to the Canadian Hemophilia Society, she received training and information about the condition.

Due to the treatments and medical care her son required to improve his quality of life, the family lived between Canada and the United States. However, in 1996, when her son was 11 years old, Haydée was invited to the Dominican Republic to speak to a group of parents of children with hemophilia.

She began to research this condition further in the country; however, she quickly realized the lack of guidance, awareness, and the limited medical attention patients were receiving. In July of that same year, she decided to establish FAHEM using her own financial resources, focusing on helping families from a more social perspective.

FAHEM was officially founded on July 22, 1996, but it became a registered NGO in November 1997 under Decree 277-96. Its work extends across the country, primarily in Santo Domingo, where most of the patients are located.

Currently, one of its main roles is to support families through initiatives that empower patients and contribute to better management of the condition within the family nucleus.

If you are interested in reaching FAHEM you can do it though the following channels.

• Facebook: HemofiliaRD 
• Instagram: HemofiliaRD
• E-mail: [email protected]
• Phone: +1 (809) 707-0287