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Based on the knowledge received during the mentoring sessions, I personally share with the parents of patients in their training and support for a better understanding of social problems.
We have joined forces with the same capabilities but with different skills that add up to the same goal.
We go without suspicion or fear to PAHO-WHO, the Health Commission of the National Assembly and the Constitutional Court of Ecuador.
-Eliecer Quispe- Fedel Dasha- Ecuador
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We consider and reiterate the commitment to constant training for all administrative and medical personnel, in order to gain knowledge of everything that encompasses our performance as an organization that generates changes both in our patients and their families, as well as in the Institutions in charge of managing health. .
At the same time we work so that the patient is empowered in their role, which makes them an active part in the processes that involve a better quality of life.
-Leticia Herrera- FUNDEM - Ecuador
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The most specific actions that we have carried out after receiving the mentoring were those of public policies, we have requested training and laws from other countries to form a law in Costa Rica on rare diseases, the speakers we had were of high caliber.
We visit the central hospitals of the country and we are mapping patients and making a database for orphan disease.
-Briseida Cantillo- ANASOVI- Costa Rica
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We have made some strategic changes to the association.
On some occasions we have changed the dynamics of the activity with patients, due to suggestions received in the mentoring sessions and they have had a positive response from people.
We are initiating an approach with state entities and we are including strategies learned in the meetings.
-Verónica Milanesi - ASOCOEM- Costa Rica
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From the training we have been more aware of the importance of the development of public policies, we were in Colombia in a workshop on the matter, together with other organizations, we had a meeting with the National Census to see how we can have figures of how many affected there are in the country with rare diseases.
In the next few days we have the 2nd meeting of associations of patients with rare diseases and we have faith that we will be able to travel to Spain to the Meeting of Associations with Rare Diseases.
- Ericka Otero- HELPS- Panama
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We are about to have our next meeting to identify possible leaders among the patients and that the foundation already has the required volunteers to advance with the training of the patients of its drug application process.
Attending the mentoring sessions has helped us to have a better understanding of issues of operation, leadership and growth and together with Funarp we are working hand in hand.
- Yarisol Sima- AUPA- Panama
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