About the NMO
NMO name | Fundación Apoyo al Hemofílico |
Location | Los Cacicazgos, Santo Domingo, Dominican Republic |
Founding date | 1996 |
PWBDs served | 683 |
Social media pages* |
Background
The Fundación Apoyo al Hemofílico has been a WFH NMO for 25 years. In recent years, the organization has taken part in a WFH Youth Twinning, received support through the WFH Humanitarian Aid Program, and contributed to the World Bleeding Disorders Registry (WBDR). A youth delegate also participated in the WFH 2025 Comprehensive Care Summit. The organization is also involved in the Global NMO Training (GNMOT) and is involved in a WFH country program.
Q&A with the NMO
The following answers from the NMO have been edited for clarity.
What services do you offer to your community?
We offer a range of services to our bleeding disorders community, including education through self-infusion workshops and advocacy efforts. We also provide psychosocial support for our community, and have a spokesperson to represent and speak on behalf of our members.
What are the challenges your NMO faces?
One of our main daily challenges is achieving equitable access to medication. We’ve worked to overcome this by advocating with various health authorities. For other organizations facing the same issue, our advice is to come together with a clear, unified message that presents the problem in a straightforward way to health authorities.
What are the main challenges facing the bleeding disorders community in your country?
Our main challenges include limited access to specialized tests (such as for von Willebrand disease (VWD) and factor X), a lack of diagnostic capacity, restricted access to medication, and difficulties accessing treatment in hospitals. To address these issues, we run projects aimed at improving diagnosis; we have launched a registry; and we hold regular meetings with decision-makers. We also receive valuable support from the WFH and our medical committee.
Why did your NMO join the WFH?
We’ve been a WFH affiliate member for 25 years. What motivated us to join was the opportunity for development and the chance to benefit from the learning resources and support offered by the WFH.
How would you describe your experience collaborating with the WFH?
Our experience has been very positive. Through the workshops and conferences, we’ve participated in, we’ve received high-quality training, and we’ve had the chance to connect with other WFH-affiliated organizations. Since joining, one of the most meaningful impacts has been being able to share the experiences and learnings we’ve had thanks to the WFH with other NMOs in the region.
Which WFH programs have been the most impactful for your community?
The WFH programs that have had the greatest impact in our community are the WFH Humanitarian Aid Program and the WFH Twinning Program. Both have played an important role in strengthening care and support for people with bleeding disorders in our country.
What was your main achievement in the last year?
Our most important achievement last year was the increase in purchases of safe and effective medications. We were able to achieve this by maintaining an open channel of communication with health authorities. One of the main challenges we faced during this process was dealing with personnel changes in those health authorities.
What progress have you made over the years?
Over the years, the level of care in our country has increased significantly—there is a clear “before and after”. Today, families and people with bleeding disorders in the Dominican Republic are more empowered, better informed about how to care for themselves, and have improved access to medication.
What advice can you give other NMOs?
Our advice to other NMOs is to always stay alert and attentive to any challenges that may come up. It’s also important to have thorough documentation to support the work you do. Additionally, building a strong relationship with the healthcare professionals who work with hemophilia and other bleeding disorders is essential.
Would you like to highlight any of your team members?
As a team, we would like to highlight the contributions of several key members: Hilda Hidalgo; Joanne Taveras, MD; Haydee Benoit; Margarita Rodriguez; and Fendi Valdez. Their dedication and hard work have been invaluable to our organization. We would also like to thank our board members: Haydée Benoit, Mercedes Benoit, Liliana Khoury, Lorsy Castillo Cáceres, Hilda Hidalgo, Margarita Rodríguez, Vincenzo Mastrolilli, Jose Polanco, Yonathan Joseph, Luis Ureña, Joanne Taveras, Rosa Nieves Paulino, Ricardo Coste and Fendi Valdez.
Have you been successful advocating with governments?
Yes, we have been successful in advocating with governments to influence national policies affecting bleeding disorders. One key lesson we learned is to carefully map out the decision-makers in the health sector, schedule meetings with them, and work together to agree on joint plans to address the issues. Looking ahead, we envision a future where everyone with bleeding disorders in our country has equitable access to care and treatment.
Do you have any message for the global bleeding disorders community?
Our message to the global bleeding disorders community is this: no matter the size of your NMO, your work is meaningful: you are helping people with bleeding disorders live more full and meaningful lives.
Find out more
To read about the way the WFH and NMOs collaborate to make a difference in local bleeding disorders communities, please read “National member organizations: the heartbeat of the WFH” here.
To read more stories in this series, please click on one of the links below.
NMO | Country | Article |
Asociación Costarricense de Hemofilia | Costa Rica | |
Federação Brasileira de Hemofilia | Brazil | |
Federación de Hemofilia de la República Mexicana | Mexico | |
Haemophilia Association of Mauritius | Mauritius | |
Hemophilia Society of Malaysia | Malaysia | |
Kyrgyz Hemophilia Society Community of Handicapped-Hemophiliacs of the Republic of Kyrgyzstan | Kyrgyzstan | |
Libyan Association for Hemophilia | Libya | |
National Hemophilia Network of Japan | Japan | |
Syrian Hemophilia Society | Syria | |
Association Tunisienne de L’Hemophilie (ATH) | Tunisia |
* Disclaimer: These are external sites, and their content has not been developed nor endorsed by the WFH.
