Fanconi Anemia Support Vietnam (FASV) is using their grant to establish a support group and enhance FA knowledge within Vietnam’s medical infrastructure. Their project aims to create a network connecting FA patients with experienced doctors through an online database and social media. They plan to integrate FA treatment protocols into the Ministry of Health’s program, and support genetic testing and clinical trials. By building a digital toolkit and collaborating with a tele-nurse, FASV will improve access to care and empower patients, especially those in rural areas, to manage their condition effectively.

The Fanconi Anemia Foundation is launching a Psychological Care Service Unit to provide essential support for FA patients and their families in Spain. This initiative addresses the critical shortage of psychological professionals and long wait times within the Spanish healthcare system. The service aims to create a safe, supportive space where individuals can receive timely, evidence-based psychological care to manage stress, anxiety, depression, and other emotional challenges associated with Fanconi Anemia. By offering personalized support and self-care tools, the project seeks to enhance emotional well-being, improve quality of life, and assist with social adaptation throughout the disease process.

PFARN is advancing FA care in Portugal by implementing the comprehensive “Add-on Screening” program for cancer prevention developed by our partners in Germany (Eunike Velleuer and Christine Krieg). The project focuses on training Portuguese clinicians, organizing collaborative screening sessions, and establishing a robust follow-up process. Key activities include virtual training, practical screening sessions, and introducing the “Power 2U/Oral Self-Screening” program to empower FA patients with tools for early detection. This initiative aims to improve cancer prevention practices and ensure consistent, high-quality follow-up care for FA patients across Portugal.

This project aims to gain a deeper understanding of the experiences of individuals with Fanconi Anemia (FA) and their families in Australia and New Zealand. By examining the issues encountered before, during, and after diagnosis, the project seeks to identify patterns of missed diagnosis and their impact. This research will provide valuable insights for medical specialists, leading to improved diagnostic practices and earlier intervention. This group plans to interview study participants, publish findings in a peer-reviewed journal, and disseminate results to medical professionals and networks to enhance understanding and care for FA patients in the region.

FA families in Brazil, led by a father to a teen with FA, and an adult with FA, will use their grant in two ways: holding a family meeting in Brazil in 2024, and establishing a Brazilian FA Support Group. Because Brazil is such a big and populous country with FA patients from all socioeconomic levels, organizers know that bringing FA families together in person is a very effective way to bring FA experts to the people who need them most. The larger goal of the project is to develop a dedicated Brazilian FA patient and family association, aimed at disseminating information, building a patient registry, conducting fundraising campaigns, and fostering international collaborations. This association will not only enhance local support but also contribute to global FA awareness and knowledge-sharing efforts.

In many countries, the first major obstacle for FA patients is getting the actual diagnosis. Dr. Sara Frias and her team, based in Mexico, have been working hard to spread FA awareness and access to diagnosis in Mexico. They have trained cytogeneticists not only in Mexico, but also in Bolivia, Costa Rica, and Argentina. Their mission is to give Latin American patients with FA access to diagnosis so that they have the opportunity to receive treatment, education, and support to have a better quality of life. To do this, their grant will allow them to train cytogeneticists from five Latin American countries, who will then be able to perform diagnostic testing for FA in their respective countries. This will enable many more FA patients in these countries to finally have an accurate diagnosis and a path for treatment and support.

The Portuguese Fanconi Anemia Research Network recently received an FA support grant to focus on bringing FA families and physicians together and creating guidelines on adult care. First, they will organize the first FA meeting so that families and professionals can meet and learn from each other. They will then create guidelines to aid in the transition from pediatric to adult care. They hope that stronger relationships between FA professionals and families will lead to better clinical practices.

The Nate Foundation was awarded a second grant to continue providing information, counseling, and medical support for Fanconi anemia patients. With this new funding, the Nate Foundation plans to extend their FA awareness campaign at medical facilities in Zimbabwe and organize the first meeting for FA patients and families. The meeting will provide the opportunity for information sharing and the launch of a more formal patient support group. They are also working to develop a list of FA patients in the country, which will help to establish a clearer picture of demographics in Zimbabwe.

The Argentine Fanconi Anemia Group was established in 2020 provide a containment space in which families can share their experiences, concerns, doubts, and difficulties that arise in order to improve their quality of life. Additionally, GAAF hopes to create a network between the medical community, researchers, and patients to help update guidelines and treatments. With this support grant, GAAF will hold virtual conferences to share information amongst doctors and scientists, plan trips to meet Fanconi anemia patients face to face, grow social media presence, and print graphics to educate about the disease.

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.

Fanconi anemia Spanish-speaking Latin-American education project. The mission of this collaborative group is to enhance FA community-building in Latin America to improve the diagnosis and treatment of patients with FA and advance their quality of life. Following a grant in 2019 to “Un Corazon por Fanconi”, researchers, clinicians, individuals with FA and family members began to form connections and develop educational materials for Spanish-speakers. This new grant will continue to build those efforts: (1) strengthen the communication platform available to Spanish-speakers in the FA community; (2) develop educational materials specifically for the Latin American FA population; and (3) connect patients and family members to FA researcher and doctors through virtual meetings and conferences.

The first meeting of patients with FA in Poland. The two aims of this project are (1) to organize the first meeting of patients with FA and their families and (2) to provide education and support services to families with FA in Poland. Researchers and clinicians at this institution in Poland have been seeing FA patients for years and will use this grant to gather all patients together so they may connect, share, and learn from experts. In addition, they will use this meeting as an opportunity to begin developing an FA support group in Poland and to create The Polish FA Patient Registry.

Diagnostic support and genetic characterization of subtype in FA patients. FA patients in Egypt do not have a referral center that is easily accessible. This grant seeks to improve the clinical diagnostic process and offer carrier detection, prenatal and premarital genetic counseling, as well as help characterize FA mutations for patients. The acquired data will improve the quality of genetic counseling and provide information about disease prognosis and future evolving genetic management modalities.

The first meeting of patients with FA in Mexico. The aim of this project is to hold the very first meeting for FA patients in Mexico. The opportunity for patients and families to meet in person is the first step to build a vibrant and organized FA community in Mexico. Through sharing personal stories and experiences, common needs, and hardships can be identified and addressed. Concurring patient and scientific meetings allow for experienced clinicians and researchers to be available to answer both common and individual questions and concerns. Additionally, 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.

Digital marketing and fundraising strategy. In order to make a greater contribution to research, The Fanconi Anemia Foundation (FAF) seeks to increase fundraising by engaging partners and donors, and mobilizing affected families as fundraisers. This grant will enable FAF to partner with a digital marketing company that will develop a fundraising and communications strategy and plan. This will allow FAF to continue building a supporter base and increasing income to support research and FA families in Spain.

Diagnostic protocol and support for FA patients in the DR: Diagnostic protocol and support for FA patients in the DR. Un Corazon por Fanconi is a newly established foundation currently focused on raising awareness and funds. This project focuses on developing a diagnostic protocol for FA patients in the Dominican Republic, providing support services for FA families, and building organizational capacity. With help from experienced FA researchers in Mexico, the team in the DR will work to form a network of doctors who can learn about the diagnosis and management of FA. This project is led by an adult with FA, Ana Tabar.

Creation of an FA support group in Australasia: Creation of an FA support group in Australasia. The aim of this project is to establish a support group for families and individuals with FA in Australasia, which will help build knowledge of FA within the existing medical infrastructure. A relatively small population of people with FA spread out around Australia and New Zealand results in a lack of experienced FA specialists. Fanconi Anaemia Support Australasia will formalize efforts started by St. Vincent’s Institute in Melbourne to engage with the local FA community, build awareness, and build a stronger medical infrastructure. This project is led by an FA family (the Hawkshaw family), with support from FA researchers.

Creation of an FA Europe Group: This project aims to unite the existing FA support groups across the 23 member states of the European Union into an umbrella group that will increase collaboration between countries, as well as augment partnerships with EU healthcare networks and pharmaceutical companies. FA Europe will connect patients, clinicians, and scientists, and act as a facilitator for fundraising, sharing best practices and collaborating on research efforts. The group will use the grant to carry out the start-up meeting between countries in April 2020. This project is led by the Fanconi Anemie Werkgroep in the Netherlands and Fanconi Hope in the United Kingdom.