“Reframing Rare” for Rare Disease Day 2020: Jhonny Hernández Torres

To celebrate Rare Disease Day 2020 (29 February), Takeda launched the “Constellation of Rare Stars” campaign to shine a light on some of the many individuals who have had a global impact on rare diseases. Through this campaign, we share the remarkable stories of 29 patients, families, caregivers, healthcare professionals and community members who are helping to “Reframe Rare”. 

Rare is strong. Rare is proud. Rare is many. Here we’d like to tell you the story of one of our “Rare Stars” – Jhonny Hernández Torres, a Hunter syndrome patient, advocate and founder of the patient association, Apego.

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Jhonny has never let his condition – Hunter syndrome, also known as mucopolysaccharidosis II (MPS II) – limit his will and ability to live life to the fullest. It just wasn’t a reason to not pursue his dreams and ambitions. As an engineer who specialized in quality and performance, Jhonny lives by example and dedicates his life to supporting people with a genetic disorder and those around them.


The hardest thing for Jhonny, however, was learning that his nephew also has mucopolysaccharidosis II (MPS II). It inspired him to do even more. When he founded the patient association Apego, it was a one-man mission. All he wanted was to help other rare disease patients by sharing his own experience with MPS II, he didn’t know he would one day receive public recognitions from academic and governmental entities.

Today, Jhonny trains patients with rare diseases and their caregivers on how to better navigate the health system in Colombia. With his expert knowledge and personal experience, Jhonny feels it’s his mission to help make sure all patients with a rare disease in Columbia have access to the treatment and care they need in a timely fashion.

To find out more about Jhonny and his patient association, Apego, visit http://www.fecoer.org/asociacion-de-pacientes-con-enfermedades-geneticas-y-de-baja-ocurrencia-apego/


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