UN Online Volunteers have been an unparalleled professional asset to the Fundación Comunidades Vulnerables de Colombia (FUNCOVULC), a non-profit organization committed to the identification and comprehensive care of individuals suffering from Huntington Disease and other Rare Diseases in Colombia. Overwhelmed by inexplicable degenerative symptoms and confronted with economic and social exclusion, individuals affected by any of these life-threatening or chronically debilitating diseases fail to obtain timely and accurate diagnoses, and are too often denied access to medical care. Since 2011, when FUNCOVULC identified a relatively high population with Huntington Disease living in extreme poverty in the municipality of Ariguani, the Foundation has been working to safeguard the right to health and access to health care of these peoples. By virtue of the collaboration with 85 UN Online Volunteers, the 6-member grassroots Foundation was able to develop and implement five different projects, mostly with local families as direct beneficiaries.
The collaboration with online volunteer Anahi Silva Tosca relates to the project aiming to bring two crucial issues to the attention of relevant national health institutions: a) the implementation of the 2010 Colombian Law on Orphan Diseases b) inclusion in the said law of legal protection as a necessary regulatory condition in order to meet the needs of individuals affected by rare or orphan diseases who are not officially diagnosed and, as a consequence, do not receive proper medical treatment.
Anahili’s technical support and commitment in consolidating the results of FUNCOVULC’s research about the Huntington Disease in Colombia and bringing them to publishable standards was remarkable. Thanks to her contributions, this research project turned into a scientific paper fit for publication. It should eventually lead the Foundation to receive more support, including from the Colombian government.
Through its collaboration with online volunteers, FUNCOVULC has raised awareness about the rights of individuals affected by rare diseases vis-à-vis local, regional, national and international entities. “On a personal note,” states Mariela Campo Oviedo, President of FUNCOVULC, “the experience with UN Online Volunteers has left a deep imprint in the way I carry out my social work: I feel I am not alone in my mission anymore, I can count on individuals from all over the world who stand ready to support”.
Anahi holds an advanced degree in Law. Currently she is a researcher at Human Rights Academy of Universidad Juarez Autonóma de Tabasco, Mexico.