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.

WhatsApp Image 2018-04-21 at 20.20
WhatsApp Image 2018-04-21 at 20.20

press to zoom
WhatsApp Image 2018-04-21 at 20.27.26
WhatsApp Image 2018-04-21 at 20.27.26

press to zoom
WhatsApp Image 2018-04-21 at 20.20
WhatsApp Image 2018-04-21 at 20.20

press to zoom
WhatsApp Image 2018-04-21 at 20.20
WhatsApp Image 2018-04-21 at 20.20

press to zoom
1/7
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.

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 .

1/2
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.
166988836_277474200497771_19582226623148

Participation in the 4th National Congress of Rare Diseases

Talk by Dr. Rodrigo Matsui Serrano, an ophthalmologist specializing in the retina, knowing Girata Atrophy and future therapies.

Third National Forum on Rare Diseases "La Investigación y las Enfermedades Raras en México"

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.
141033754_236293124615879_49130013041436

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.
117261755_171819597729899_69627782100166

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
119865338_182191803359345_48422390871575