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Hear from Luisa Leal, Founder & CEO of The Akari Foundation, who shared this quote about being named one of the 2023 recipients:
Learn About the Rare Disease Community: Meet Luisa Leal

MDA Announces Advocacy Collaboration Grants

Luisa Leal, founder of The Akari Foundation, was on the BloodStream Media podcast, in a new episode called “From Mexico to Texas: Talking about the Akari Foundation.”

In this episode, Luisa shares her start in the world of rare diseases and all the initiatives that are being carried out at the foundation.
“We need to work together to promote equitable access to gene therapies. Access to these life-altering therapies should not depend on your level of income and should certainly not depend on your race.”.

An Interview With Luisa Leal, Founder and CEO of The Akari Foundation

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Luisa Leal, founder and CEO of The Akari Foundation, a Texas-based nonprofit that advocates on behalf of Spanish-speaking families affected by Duchenne muscular dystrophy (DMD).

The Future of Medicine

Legislative Briefing and Reception

Patient Advocates Seek to Raise Awareness of DMD Among Spanish Speakers

Moving the Needle: Rare Disease Clinical Trials Ecosystem for Patients of Color

Using Culturally Appropriate Resources to Influence Health Equity and Access

Global genes

World Duchenne Organization

Horizon Panel Representation Global Webcast

Rare is community by Horizon

A rare reality podcast Jordan's Guardian Angels

Rare Revolution magazine

Global genes rare on the road

Interview with Patti Limon

Aguas con la discapacidad Aguascalientes

RARE on the Road 2021

Interview with True Reason Ministries


For media consultations or interviews, send us an email to:


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