Research
Fupaeh is born with the aim of understanding the complexity that people with disabilities or rare diseases and their families go through. It seeks to generate opportunities that facilitate their integration to society and achieve fulfillment as people. We develop research projects with a social relevance, that lead us to a better understanding of the reality of people with RD or disabilities and their families. Based on scientific evidence, we propose assistance and treatment actions that look to promote a better quality of life in patients and their families. We offer reliable and valid information to promote the design of public policies that promote the well-being of this population and their full social inclusion.
-All of our research projects are developed within a framework that encourages respect for dignity, protection of well-being and rights of all the people who participate in them.
-We respect the Argentinian legislation regarding protection of the people who participate in research in health areas. This legislation is based on international regulations, whose axis is the recognition of the inherent dignity of people and their inalienable rights.
-All of our projects are evaluated by independent research ethics committees. They ensure the confidentiality of the data, informed consent, the possibility of withdrawing from the study, among other issues, as stipulated by our legislation.
– We include, in a strategic way, the development of artificial intelligence. IA provides advantages for obtaining and processing data, providing fast and effective communication that facilitates decision-making, improving adherence to treatment, and positively transforming people’s quality of life
– We develop tools so that people with disabilities or EPOF can find opportunities that facilitate their inclusion in society and thus achieve a full life.
Research on Quality of Life
Our organization conducts a range of research projects with the primary objective of examining the quality of life and adherence to treatment/therapies among individuals living with rare diseases or disabilities, as well as among their caregivers and support networks.
The complexity that often accompanies people who live with a diagnosis of a rare disease or disability leads us to ask ourselves what the quality of life of these people is like and how we can improve it. For this reason, we have decided to investigate the main factors associated with it.
It is extremely interesting to know how the acceptance of the diagnosis by the main caregiver is related to the family’s quality of life. Therefore, we have validated a version in spanish of a tool developed by researchers who are part of renowned international institutions, such as: National Human Research Institute, Johns Hopkins Bloomberg School of Public Health, Columbia University Medical Center, National Institutes of Health. The scale is named Scale of Psychological Adaptation to Genetic Counseling, EAP-AG.
We study the emotional impact of the diagnosis and the adherence to treatment in children with cystic fibrosis and other rare diseases.
In collaboration with Deusto University (Bilbao, Spain), we participate of a project that aims to identify psychosocial factors that affect quality of life in caregivers of children with neuromuscular diseases.
IA Reseach
We develop research projects in Artificial Intelligence applied to people with Rare Diseases or disabilities, in collaboration with groups of great academic national and international prestige.
Collaborating with the University of Comillas (Madrid, Spain) and the University of Deusto (Bilbao, Spain), we are conducting a study on the impact of COVID-19 on caregivers of children and young adults diagnosed with neuromuscular diseases in Spain and Latin America (Argentina, Uruguay, Paraguay, Chile, Mexico, Ecuador, Brazil).
We develope AI tools to promote improve quality of live of people with rare diseases or disabilities.