Turner syndrome awareness in Ecuador

by Fundacion Ecuatoriana para la ayuda al Sindrome de Turner
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Turner syndrome awareness in Ecuador
Turner syndrome awareness in Ecuador
Turner syndrome awareness in Ecuador
Turner syndrome awareness in Ecuador
Turner syndrome awareness in Ecuador
Turner syndrome awareness in Ecuador
Turner syndrome awareness in Ecuador
fepast activities
Some activities have been carried out in these months, such as leadership training for the board of directors of fepast, collaboration with the Ecuadorian Federation of Rare Diseases on the day of rare diseases that took place on February 28, I participated in a work table for the creation of rare diseases, members of fepast received dental care thanks to the university of the hemispheres, we supported the Pide foundation in a sit-in at the ministry of health to import safe immunoglobulin for their group of patients, in addition to some facebook live in the issues of heart disease in Turner syndrome also on the issue of how to be recurrent donors of fepast.
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  • During the reporting period, the following activities have been carried out: an interview with President Lilian Alcivar at the Sucre University of Bolivia, Facebook live on the following topics: Methodological Learning Strategies, the menopause of women with Turner syndrome, an invitation to the women without limits to the partners, interview with the Executive Director Tatiana Pogo and the president Lilian Alcivar to the program of the network of women leaders entrepreneurship violet, through the Turner psychology page a sexuality workshop was developed, Practical exercises to handle situations of: Social panic , Bullying and Interpersonal Conflicts, on the boulevard of the United Nations on Saturday, August 13, the Inclusive Artistic Festival "Cultura Viva" was held, presentation of Jacqueline Benalcázar, celebration of the international day of Turner syndrome on August 27, 2022 in the auditorium of the financial platform, report on Teleamazonas for the International Day born On Turner Syndrome, we attended the Forum on Rare Diseases organized by the Ministry of Health in the Baca Ortiz Hospital auditorium
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a page called turner psychology has been implemented in which several topics have been discussed for the psychological well-being of girls and women with turner syndrome, the main topics were communicating our essence, Outstanding Turner Women in which we had several women like Jackie Benpro, a food engineer, Mara Gittess, Master in Psychology, Trinidad Rico, Bachelor of English Philology, Gabriela Loveman, Business Administration Engineer with a postgraduate degree in marketing, Patricia Marques, lawyer and journalist, Laura Viviana Mendez, psychopedagogue, finally the talk Your gestures and emotions say surprising things, in which you learned, for example, to understand and send messages without words, talk by Luz María Aguilar Ramirez, teacher in psychoanalysis, human resources and pedagogy.

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To ensure the safety of the members and guests due 
to COVID-19 and the political situation in Ecuador,
talks have continued to be held virtually on important topics
for Turner syndrome, such as what it is like to be the mother
of a girl or woman with syndrome. of turner, methodological
learning strategies in turner syndrome,
Valentine's Day has also been celebrated through a virtual
meeting and of women with a psychological talk for the
development of women, meetings with the ministry
have also continued of health to continue with the
medical care of the members and the development
of the medical guide for Turner Syndrome.
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Through zoom videoconferences, talks on psychology have been held, on the Facebook page of Turner psychology, on the Facebook page of the Foundation other topics have been carried out such as image consulting, workshops on disability, in the Association of Municipalities of Ecuador has carried out a program for the 20 years of existence of the Foundation, in which there were recognitions to the Foundation, talent demonstration of the members, also a Christmas program and attendance at a Christmas cantata. Projects have been presented in Conquito and in the Institute for the Promotion of Creativity, although unfortunately they were not approved.

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Organization Information

Fundacion Ecuatoriana para la ayuda al Sindrome de Turner

Location: QUITO, Pichincha - Ecuador
Website:
Facebook: Facebook Page
Fundacion Ecuatoriana para la ayuda al Sindrome de Turner
Tatiana Pogo
Project Leader:
Tatiana Pogo
Quito , Pichincha Ecuador

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