Latin America (also referred to as LATAM) is a vast region with almost 600 million people – and therefore, many people there are impacted by rare diseases.

“Having a presence in LATAM is incredibly important for PTC, as it allows us to increase access to our treatments for people living with rare diseases in this expansive region” said Bruce Braughton, SVP & GM, Americas, PTC. “Our dedicated team operates in 13 different countries in the region, with dedicated and passionate employees across these diverse countries. PTC’s operations in LATAM are separated into two distinct sub-regions: SAM and Brazil.”

SAM is located in the Americas territory and includes essentially all of Latin America except for Brazil. “S” stands for the countries in the South Cone (Argentina, Chile, Uruguay and Paraguay), “A” stands for Andean countries (Colombia, Ecuador, Peru), and “M” for Mexico. SAM covers almost 340 million people and currently benefits around 200 patients with four therapies and programs in 12 countries, supported by nearly 40 employees.

“SAM is very dynamic not only due to the diversity of countries and cultures, the political and economic instability, but also due to its territorial extension,” explains Joeli Mansim, VP & GM SAM Region, PTC. Each sub-region of SAM manages more than one country, or a major country. The level of complexity in each one of these sub-regions is very high: The healthcare systems are different in each country of each sub-region, requiring expertise, knowledge, and a lot of resilience to navigate each of these elements.

“This requires a special level of people and engagement to succeed,” says Joeli. “People moved by passion and entrepreneurism, people that want to be better and want to make the world better for the patients and their families – this is our LATAM team.”

PTC also has a strong presence in Brazil, the largest country in LATAM with 215 million inhabitants and more than 13 million people living with rare diseases. In Brazil, patients have access to rare diseases therapies through judicial process.

“Brazil is one of the most important regions at PTC globally,” says Rogerio Silva, VP & GM, Brazil, PTC. “Our goal is to save patients’ lives, and to do that we have to do our best all the time to provide access to their treatment.”

The team has implemented innovative initiatives, like the implementation of saliva test to determine a genetic diagnosis, providing this service to patients located in the most remote areas of the country. Brazil has also made incredible impact in the rare disease community by building important relationships with healthcare providers and implementing inspiring and unique disease education and awareness campaigns. For example, the team recently won an award for their campaign to raise awareness of the rare disease familial chylomicronemia syndrome (FCS). The team partnered with Mocotó, an award-winning restaurant in São Paulo, to become Mocotó SQF, a restaurant tailored to people living with FCS based on the concept “Eat without fear” (“SQF” is an abbreviation in Portuguese for FCS).

A unique aspect of operating in LATAM is the varied cultures and many different pathways for treatment access across the diverse countries.

“People tend to think that the culture is uniform in the region, and it is not,” says Joeli. “It is very enriching to learn and accept cultural differences, and it is critical to the business in the region. It requires diplomacy to navigate cultures and extract the best in the people to fit the same purpose. Diplomacy doesn’t mean politics to me. It means transparency, honesty, respect, and trust.”

“The PTC LATAM team has made an incredible impact to the rare disease community in SAM and Brazil,” says Bruce. “Their innovative and entrepreneurial spirit, dedication to driving access and unwavering commitment to patients is inspiring. I truly believe that we are just beginning to see the full potential for what this talented team can do and I look forward to seeing this PTC LATAM Team make an even bigger difference for the patients/families in the region that are counting on them!”