While the FA Research Fund is based in the United States, FA research, families, and support organizations span the entire globe. To strengthen the efforts of our partners in the international FA community, FARF established the International FA Support Grant program in 2018. Each year, FARF awards up to five $10,000 grants for one-year projects that address the needs of the global FA community. These needs include access to medicine, doctors, and facilities; organizational and infrastructure needs and access to family support services.
So far, seven international support grants have been awarded and programs are underway in nine countries as a result.
This project aims to unite the existing FA support groups across the 23 member states of the European Union into an umbrella group that increases collaboration between countries and partnerships with EU healthcare networks and pharmaceutical companies. FA Europe connects patients, clinicians, and scientists, and acts as a facilitator for fundraising, sharing best practices and collaborating on research efforts.
Un Corazon por Fanconi, a foundation started by an adult with FA, Ana Tabar, received a grant to develop a diagnostic protocol for FA patients in the Dominican Republic (DR), provide support services for FA families, and build organizational capacity. With help from experienced FA researchers in Mexico, the team in the DR is working to form a network of doctors who can learn about the diagnosis and management of FA.
A relatively small population of people with FA spread out around Australia and New Zealand results in a lack of experienced FA specialists. FA parents – with support from researchers in Australia – used their grant to establish a support group for families and individuals with FA in Australasia and works to build knowledge of FA within the existing medical infrastructure.
The opportunity for patients and families to meet in person is the first step to building a vibrant and organized FA community in Mexico. The aim of this project is to hold the very first meeting for FA patients in Mexico. Educational sessions tailored to target patients with FA and their families will be held to provide reliable and up-to-date FA information and research participation opportunities. The meeting will take place once it is safe for participants to gather.
FA patients in Egypt do not have a referral center, which results in the lack of clear diagnoses and little or no access to genetic counseling. A long-time FA researcher received a support grant to aid the clinical diagnostic process, offer carrier detection, prenatal and premarital genetic counseling, as well as help characterize FA mutations. Not only does this project help patients directly, but the data will improve the quality of genetic counseling and provide information about disease prognosis and management.
The Fanconi Anemia Foundation (FAF) received a grant to support their efforts to increase fundraising and mobilize affected families as fundraisers. This grant enabled FAF to partner with a digital marketing company that developed a fundraising and communications strategy and plan. FAF continues to build their supporter base and increase their income to support research and FA families in Spain.
The Nate Foundation was founded by parents of two kids with FA in Zimbabwe. They recently received an FA support grant to address the lack of information about FA in their country and improve access to support and information for patients. First, they will create a support group for individuals with FA and their families. Next, they will prepare educational information and give seminars to medical institutions. Finally, they will partner with healthcare practitioners and local government to host an educational campaign to spread awareness about FA among the public and within the medical community.