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.
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
FUNDREPA facebook page
(NOTE: Microsoft Bing translates website to your language www.bing.com/translator)
