Cystinosis Support Group in the Northeast of Brazil
Written by Anon, published 10 months ago.
In 2011 we began a support group for individuals with cystinosis and their families. There are currently more than 100 people registered with cystinosis, including children and adolescents in the Institute of Children's Hospital of the University of São Paulo, but there are other known cases in the country which are not treated in São Paulo. Taking into account the lack of information and a national system for the diagnosis of disease, these numbers may be even higher.
The continental size of Brazil and the general lack of knowledge about this serious disease can make it difficult for newly diagnosed patients and their families to find information. This reality is driving the creation of at least two Cystinosis Support Groups in Brazil: one in Fortaleza, which will focus primarily the northeast and other in São Paulo.
Our goal is to help people by bringing information about this rare disease. For this, we need to have the families registered and united in this challenge, so that we can improve the understanding of it, to support families and encourage the search for a better quality of life for patients affected by cystinosis.
The creation of a web page, the circulation of a regular newsletter containing, among other information, updating and researches on prophylaxis of cystinosis, will not only allow the contact between families and the support group, as well as to promote the inclusion of new families for the diagnosis of new cases. So we can share everything about cystinosis, the drugs, the daily routine of our children, our doubts, hopes, inspirations, and much more.
The support group also intends to include in its routine meetings with families, develop awareness campaigns and organize events with the participation of families, doctors and researchers, as well as establish partnerships with government agencies, public and private companies in the context of consolidate and systematize the support of those affected with cystinosis and their families.
Written by Anon, published 10 months ago.
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