Esteban Bullrich
Esteban Bullrich

In April 2021, Argentine Senator Esteban Bullrich was diagnosed with ALS (amyotrophic lateral sclerosis). The news was painful, but he refused to let them determine the course of his life and limit him in the pursuit of his work and passion. He expressed this in the letter he wrote to communicate the news:

“I am part of something much larger than 'me', and my vocation of service is intact.”.

Inspired by his strength, his family and friends around the world decided to create a foundation to help cure or improve the quality of life of those who, like Esteban, are going through this disease, and thus, move the limits of ALS research in the world, for the benefit of all

The Esteban Bullrich Foundation (EBF) seeks to promote the importance of providing education to all people and develop research on educational challenges and opportunities around the world. In addition, EBF will fund research and innovation for the treatment and cure of Amyotrophic Lateral Sclerosis (ALS), and will provide support to families and those suffering from ALS by helping them access to medical support, research and diagnostic tools.

Download the foundation's strategic plan here.

Latinamerican Scenario

From the Esteban Bullrich Foundation, we carried out a first report to analyze the current situation of ALS in Latin America. For this purpose, we studied the place that ALS occupies in the public agenda of eighteen (18) countries in Latin America and part of the Caribbean: Argentina, Bolivia, Brazil, Chile, Colombia, Costa Rica, Cuba, Dominican Republic, Ecuador, El Salvador, Guatemala, Honduras, Mexico, Nicaragua, Paraguay, Peru, Uruguay and Venezuela.

  • Research was conducted on:
  • the existence of statistics;
  • the existence of specific legislation on ALS and rare diseases;
  • access to treatment;
  • research on the disease;
  • the existence of NGOs referred to the subject;
  • and the participation of the public and private sector.

Some highlights

  • Of all the countries studied, only three have an epidemiological study on ALS (Brazil, Cuba, Uruguay).
  • In terms of legislation on the disease, only Brazil has an ordinance from the Ministry of Health that regulates care protocols for ALS patients, and seven countries have regulations on Rare Diseases or Uncommon Diseases (Argentina, Brazil, Chile, Colombia, Costa Rica, Mexico and Peru).
  • In the field of ALS research, public and/or private initiatives were found in ten countries (Argentina, Brazil, Chile, Colombia, Costa Rica, Cuba, Ecuador, Mexico, Peru and Uruguay).
  • Non-governmental organizations dedicated to the disease exist in twelve countries and they play a key role in mobilizing the agenda and providing guidance and support to patients and their families.
  • In terms of access to treatment, the existence of Reference Centers for the care of patients with ALS is a primary objective, but only in six of the eighteen countries they have been established (Brazil, Colombia, Costa Rica, Cuba, Mexico, Uruguay).
  • In almost all cases, the private sector involvement in ALS research is non-existent and this is related to the short survival of ALS patients. As many years of drug trials are needed and because prevalence and incidence are low, incentives are as well.

To see the full report, download it here.

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