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“Reframing Rare” for Rare Disease Day 2020: Foundation29

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” – Foundation29, a non-profit organization devoted to rare diseases with expertise in artificial intelligence. They specialize in developing technological tools that use medical data to help improve the quality of life for those living with a rare disease.

Why Foundation29? It’s one of the most asked questions when people first learn about the non-profit organization.

The name came from the date of Rare Disease Day, the international awareness day that lands on the last day of February every year, and specifically on February 29th every four years. As how Julián Isla – CEO, co-founder and board member – would put it, “the energy, activism and commitment to patients with rare diseases and their families are at the core of Foundation29.” 

When Julián founded Foundation29 in 2017, he only had one goal in mind, which was to rethink, re-envision and reimagine solutions for all patients with a rare disease. Julián is father to a boy affected by a very impacting rare disease called Dravet Syndrome, and the experience motivated him to start Foundation29.

Living by its mission “better medicine based on data”, Foundation29 has a range of offerings, including Health29 which is a patient health data platform designed to generate and facilitate new strategies to enable therapeutic innovation. Another solution Dx29 is a digital tool that provides augmented capabilities to help medical professionals speed up the process of diagnosis while increasing its accuracy.

Thinking back on his journey and how far he’s come, Julián once said, “the vital wound is so deep that sometimes the ability to give to others is the only way to alleviate that wound.”

To learn more about Foundation29, visit https://www.foundation29.org/ 

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