The huntington foundation in Costa Rica is new and was created only two years ago. There are currently 40 families with the disease in Costa Rica. The association specializes in helping families directly and informing them about the disease. It’s difficult for them because they need more support, advices, time and the pandemic has made things even more complicated.
In Costa Rica, few doctors are aware of the disease and it is difficult for patients to be properly oriented. Also to do the genetic test, it is a long and difficult procedure which costs an additional $100 per patient, making it complicated to people at risk from getting tested. It is clear that the foundation is new and needs advices and help in order to progress.
The Cost Rica Fundation, provides support, educates families about the disease and shares experiences. They are very close to the families and the idea isn’t to just share informations or advices but creating a real relationship between them. They still have no information yet on HD research and need to exchange with other structures to share informations, advices and experiences.
Juan Carlos Ángulo : Juancarlosangulo2@gmail.com