The vision of GENES is to provide the necessary support to children diagnosed with a genetic condition so that families can be educated in the diagnosis, become aware of available resources and therapy options that are available to them, and gain access to workshops and seminars that will give them tools to reach the main objective; which is that these children can reach their maximum potential.
Children facing these challenges need their families to be united. GENES considers it important that parents and siblings also receive the necessary emotional support needed so that everyone can face the future in the best possible way.
We will focus on five basic points inherent to any diagnosis with a genetic condition:
- Family as the primary support system to help individuals cope with their condition.
- Education specific to the diagnosis
- Psychological / emotional well-being of both the patient and his/her family.
- Knowledge of existing resources for the different stages and situations that arise
when living with a genetic condition.
WHO ARE WE?
Dr. Mislen Bauer
MD, FACMG Become part of a network of families and professionals that understand your needs
GENES established in 2015. It was inspired by Emi, a child whose genetic condition led his mom and doctor to dream about supporting other families that have to face the difficult process of getting a diagnosis.
Our main goal is to quickly detect the most vulnerable families who are affected by a genetic condition, intellectual and/or physical disability, and accompany them through our network of allies.
Through our Alliance Network in their entire process, we generate social awareness about the importance of mental health, effective and affective inclusion, and humane and empathetic medical advice.
We currently have 6 country members in our alliance: Argentina, Colombia, United States, Mexico, Paraguay, and Peru.
The more we work together, the more we can help others who are in desperate need for emotional support
WHY WE DECIDED TO CREATE GENES?
We created GENES to educate patients, parents, and siblings about the genetic condition the child was diagnosed and now is facing.
We offer tools that will provide the emotional and physical support needed for the patient and their family.
We help them to understand that through the experience we have gained by dealing with a similar situation, we as a team can help the patient to achieve his or her full potential with love and persistence.
We want to encourage families to spread the word regarding all the services available to those facing genetic conditions. Hopefully, they can become a beacon for others as well, giving back to this community.