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ACTIVITIES
First meeting
On April 17, 2018, we had the first meeting, both partners and collaborators, coordinating the role of each nutritionist specialist, ophthalmologist, pediatrician and geneticist; in order to carry out a multidisciplinary management that improves the quality of health in patients diagnosed with Gyrate Atrophy. Also, the administrative management that we will have to accomplish with our objective as Fundación Mexicana de Atrofia Girata was commented.
Talk "Metabolic diseases with ocular manifestations: clinical, molecular and treatment aspects"
This talk was presented by Dr. Rodrigo Matsui Serrano, a retinologist with a high specialty in Chorioretinean dystrophies; Dr. Juan Carlos Zenteno, geneticist specializing in eye diseases; Dr. Leticia Belmont, pediatrician specializing in inborn errors of metabolism.
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Taught at the general session of the "FAP Ophthalmological Institute of the Count of Valencia".
Diseases that are part of the group of "inborn errors of metabolism" were made known, are patients who, due to a genetic error, are born without an enzyme, causing different clinical manifestations, among which are ophthalmological diseases that could also develop into cognitive problems, neurological, motor, among others; among which we focus on galactosemia, homocystinuria, cystinosis and girata atrophy. As well as, the proper management that these clinical and molecular pathologies should carry, and the importance of nutritional treatment that helps to reduce the progression of the disease, who experts in innate errors of metabolism are the most appropriate people to take good management .
Link with Institutions
On March 29, 2021, a meeting was held with Lic. Mónica Mieres Hermosillo, Head of the Coordinating Unit for Linking and Social Participation, Lic. Colomba Nettel Cruz, Director of Analysis of Citizen Organizations, Dr. Patricia Hernández and Mariana Terán.
In order to analyze and make visible the situation of rare diseases in Mexico, on February 26, 2021, we participated in the talks given by experts on rare diseases in Mexico and transmitted from the Senate of the Republic.
Forum: International Rare Disease Day
Participation in the forum: International Rare Diseases Day, where deputies and specialists analyzed the current situation of rare diseases in Mexico and promoted awareness.
In collaboration with Dr. Éctor Jaime Ramírez Barba, the Asociación Mexicana de Cistinosis A.C. and the National Alliance for Rare Diseases ANER.
Meeting with Dr. César Cruz and the National Alliance for Rare Diseases
Working meeting between Dr. César Cruz and members of the National Alliance for Rare Diseases, where topics that will improve the care of patients with rare diseases in our country were discussed.
1st working meeting with Deputy Dr. Éctor Jaime RamÍrez
On October 6, 2020, we participated in the First Working Meeting with Deputy Dr. Éctor Jaime RamÍrez, member of the Health Commission, Chamber of Deputies, where a discussion was held between the different Foundations and the issue of rare diseases was discussed in Mexico, through the National Alliance for Rare Diseases ANER.
Meeting of the National Alliance for Rare Diseases and Dr César Alberto Cruz Santiago
Meeting of the National Alliance for Rare Diseases and Dr. César Alberto Cruz Santiago, Technical Secretary of the Commission for the Analysis, Evaluation, Registration and Monitoring of Rare Diseases, General Health Council. Where the issue of progress in care for Rare Diseases in our country was analyzed
Ver más allá de lo posible
Fundación Mexicana de Atrofia Girata A.C., will be hosting the first event for patients with degenerative and hereditary diseases of the retina. People with this condition, due to a birth problem, are gradually losing their vision.
Date: 4 to 6 of november, 2021.
We invite you to the event "Ver más allá de lo posible":
Help us fight for the eyesight of Imanol and Julio
These brothers were born with gyrate atrophy and nned a medicine called Cyclinex 2. With your help, their vision of the future could be more promising, help us to improve their conditions.
Happy new year!
Thank you for your support!
This 2021 we were able to Raise funds for research done by the University of Pennsylvania on a possible cure for gyrate atrophy at the university, create bonds between families, host events and help a lot of people.
Present at the Fourth National Forum on Rare Diseases at the Senate of the Republic for the "February 28 International Day of Rare Diseases"
Fundación Mexicana de Atrofia Girata is part of the National Alliance for Rare Diseases ANER. We together fight for your well-being.
ANER (Alianza Nacional por las Enfermedades Raras)
​We appreciate the space and the inclusion of the events within the framework of the International Day of Rare Diseases, the invitation to the lighting of the Chamber of Deputies and Congress of the Union. We had a conversation with Deputy Emmanuel Reyes Carmona President of the Health Commission and Deputy Teresa Castell of the Health Commission, who were open to work together proposals and initiatives with us NGOs in favor of people with rare diseases.
Fundación Mexicana de Atrofia Girata was present in the Federal Chamber of Deputies at the National Forum for February 28, rare disease day. 2022.
