Translate website from Spanish to English at www.Bing.com/translator
The Foundation for Research and Support for People with Sickle Cell Disease (FUNDREPA) arose from Marianella Orozco’s life experiences. The founder decided to champion the cause of this Costa Rican group because of its need to ensure sickle-cell patients receive multi and interdisciplinary care (medical, genetic, psychological, family and socio-economic) that require and deserve. With this in view, the mission is to significantly improve their quality of life; as well as arrange programs of information and disclosure with preventive and sickle cell disease awareness at the national level.
It’s vision is to represent, mediate, fight, organize, orient and unify, both nationally and internationally, for people with sickle cell disease and their families to have a more dignified, just and hopeful view of life.
To that I say, “Amen!”
As a result of a proposed inter-agency task force by FUNDREPA in October 2006, a Committee was composed in February 2007 of integrated representatives of five entities with the purpose of developing a joint and systematic work on sickle-cell disease in Costa Rica.
The representatives of this committee include:
1. TheNational Programme of Neonatal Screening - This is a specialized laboratory for the diagnosis of diseases located in the Center for the Prevention of Disabilities (CPD) in the national children's hospital. ( Bingtranslator from Spanish – English)
2. Center for Research in Hematology and RelatedDisorders (CIHATA) at the University of Costa Rica who say 3% of the population are carriers of hemoglobin “C”(HbC) gene and 8-10% are sickle HbS gene carriers. ( Bingtranslator from Spanish – English)
3. TheCosta Rican Association of Haematology (ACH) which brings together professionals in medicine and microbiology who are specialists in hematology and Hematological Immunology and transfusion medicine. They integrate professionals from other general areas or other specialties in the health field who have an active interest in hematology. ( Bing translator from Spanish -English)
FUNDREPA educates Costa Ricans on topics related to Hemoglobinopathies (blood disorders), pain management, Iron Overload, the disabling implications of sickle cell disease, and emphasis on knowing and exercising their rights.
Theysay, “As human beings in the first instance, and as citizens of a nation, in second, our lives are protected by a vast legal framework both at international and local levels. If we are aware… we will fight for our rights in situations in which the same are to us deny. This is particularly important when it comes to vital as health, education and work areas.”
I agree 100%.
I always say that sickle cell disease is a blood disorder that affects people world-wide. FUNDREPA also has a comprehensive list of sickle cell organizations world-wide on their website LINKs section.
FUNDREPA is a voice for people with sickle cell disease in Costa Rica. To that I say, “Thank you and keep up the good (much needed) work!”
To find out more about check out FUNDREPA
www.fundrepa.org FUNDREPA facebook page
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