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We start 2023 with exciting news for the medical and scientific community!
GNU Health has been adopted by he Jérôme Lejeune foundation, a leading organization in the research and management of trisomy 21 (Down Syndrome) and other intellectual disabilities of genetic origin.
Lejeune foundation has its headquarters in France, with offices in Argentina, the United States and Spain.
On December 2022, the faculty of engineering from the University of Entre Rios, represented by the dean Diego Campana and the head of the school of Public Health, Fernando Sassetti, formalized the agreement with the president of the Lejeune foundation in Argentina, Luz Morano.
The same month, I met in Madrid with the medical director and IT team of the Lejeune foundation Spain.
Luz Morano declared “[GNU Health] goes beyond the Foundation, providing the health professionals the specific features to manage a patient with trisomy 21. We are putting a project in the hands of humanity“
[GNU Health] goes beyond the Foundation, providing the health professionals the specific features to manage a patient with trisomy 21. We are putting a project in the hands of humanity
Luz Morano, President of Lejeune Foundation, Argentina
Morano also stated: “GNU Health will pave the road for the medical management, and let us focus on our two other missions: Research and the defense of patient rights“
The agreement is in the context of the GNU Health Alliance of Academic and Research Institutions that UNER has with GNU Solidario. In this sense, Fernando Sassetti explained “It provides tools for an integrative approach of those people with certain pathologies that due to the reduced number are not managed in the best way. This will benefit the organizations and health professionals, that today lack the means to do so in the best way and timely manner. It benefits the patients, in their right to have an integral health record.”
Research and Open Science
The adoption of GNUHealth by the Jérôme Lejeune Foundation opens new exciting avenues for the scientific community. In addition to the clinical management and medical history, GNU Health will enable scientists to dive into the fields of genomics, epigenetics and exposomics, gathering and processing information from multiple contexts and subjects, thanks to the distributed nature of the GNU Health Federation.
The GNU Health HMIS counts many packages and features, some of them of special interest for this project. In addition to the specific customizations for the foundation, the packages already present in GNUHealth, such as obstetrics, pediatrics, genomics, socioeconomics or lifestyle will provide a holistic approach to the person with trisomy 21 and other related conditions.
All of this will be done using exclusively Free/Libre software and open science.
People before Patients
Trisomy 21 poses challenges for the individual, their family, health professionals and the society. The scientific community needs to push the research to shed light on the etiology, physiopathology and associated clinical manifestations, such as heart defects, blood disorders or Alzheimer’s.
Most importantly, as part of the scientific community, we must put a stop to the discrimination and stigmatization. We must tear down the barriers and walls built on our societies that prevent the inclusion of individuals with trisomy 21.
As part of this effort, GNU Health provides the WHO International Classification on Functioning, disability and health (ICF). In other words, is not just the health condition or disorder we may have, but how the environmental factors and barriers influence the normal functioning and integration as individuals in the society. Many times, those physical, artificial barriers present in our daily lives are way more pernicious than the condition itself.
The strong focus of GNU Health in Social Medicine, and the way we perceive medicine as a social science will help improving the life of the person living with trisomy 21, and contribute to the much needed healing process in our societies. We need to work on the molecular basis of the health conditions, but little can be done if without empathetic, inclusive and supportive societies so people can live and enjoy life with dignity, no matter their health or socioeconomic status.
Projects like this represent the spirit of GNU Health and make me immensely proud to be part of this community.
Happy and healthy hacking!
Luis Falcon, MD
President, GNU Solidario
Links:
- Convenio con la Fundación Jérôme Lejeune para implementación del sistema de software libre GNU Health – UNER: http://ingenieria.uner.edu.ar/boletin/index.php/noticias/956-convenio-con-la-fundacion-jerome-lejeune-para-implementacion-de-gnu-health
- Fundación Lejeune Argentina : https://fundacionlejeune.org/
- (French/English/Spanish) Fondation Jérôme Lejeune: https://www.fondationlejeune.org
- GNU Health : https://www.gnuhealth.org
- GNU Solidario: https://www.gnusolidario.org
