CHILE: SUPPORT FOR CHILDREN SUFFERING FROM INHERITED METABOLIC DISEASES



Program details

Purpose:
- Provide health, education and treatment for unprivileged children suffering from amino acid inherited metabolic diseases
- Reduce the negative results associated with these conditions, from both a health and social perspective

Period: 2007-2013

  Beneficiaries:
Chilean children aged 0 to 17 with IMD, coming from unprivileged families

Overall budget: 37 500 Euros

Partner:
AMADE Chile
www.amadechile.cl


Context

Inherited metabolic diseases (IMD) are a group of rare genetic disorders in which the body is unable to metabolize amino acids consumed in the diet. Amino acids are the building blocks of proteins and are metabolized in order to provide energy or to make other needed compounds. The compounds that are not metabolized by the body in IMD accumulate, generating a wide range of symptoms. Inherited metabolic diseases, if not treated, can cause vomiting, cramps, severe convulsive crises, neurological damage and even death. An early diagnosis of the disease, together with the proper treatment and diet are key elements for these children to achieve a better quality of life, and even in many cases, normal development.

The high cost of the treatment and stress associated with the health condition of children with IMD impact the quality of life of the whole family. Also, many of these disorders, due to their low prevalence, lack government or insurance coverage for the acquisition of drugs and specialized formulas that they require. This leaves low income families in a situation where they cannot guarantee the survival of their children.

Since the year 2007, AMADE Chile, in collaboration with AMADE Mondiale, has been working to ensure access to treatment for children with IMD that come from low income Chilean families. It has also worked to offer information and education regarding IMD to families and health professionals.




Activities & results

Between 2007 and 2013, AMADE Chile has sponsored 35 children with IMD from low income families, allowing them to achieve normal metabolic levels, reducing cognitive and physical disability and vital organ damage, among other complications associated to these conditions.

Since 2012 educational group activities have been developed for promoting the acquisition of information and skills by the families of children with IMD to ensure their proper development and better quality of life. More than 30 families of children with 7 different IMD have benefited from this educational activities.


Statement


Enfants Syrie

 

 
 

 

 

 

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