Akari Foundation

Educate and empower the Hispanic community about rare diseases, help with resources, awareness, advocacy, and education, entirely in Spanish, specializing in Duchenne muscular dystrophy. In 2024, we have a renewed focus on advocacy for diversity, inclusion and equity in the Rare Disease space and we aim to expand our opportunities for support network growth. In doing so, we will bring together more families, patients and caregivers and grant them access, free of charge, to valuable resources like industry professionals, easily accessible educational programs and medical experts that can answer questions and have more personalized communication with them, further educating care teams and elevating the level of care provided to the patient. At Akari, we believe that education, access to quality medical care and assistance should not be a privilege possessed only by the elite and English-speaking demographics and we aim to close the gaps on health disparities.

EDUCATE: We conduct outreach programs and educational initiatives to empower the Hispanic community with knowledge about rare diseases, emphasizing Duchenne muscular dystrophy. We aim to ensure that individuals and families have the information they need to make informed decisions regarding their health and well-being.
- Community Programs and Education: This includes two websites, available in English and Spanish, our blog, live and on-demand education utilizing various social media platforms, and our podcast.
- Akari Virtual Educational Webinars
- Akari Industry Education Webinars


EMPOWER: We are here to provide unwavering support and essential resources to families impacted by rare diseases. We aim to make their journey more manageable and give them the tools they need to thrive. We offer valuable resources and support services to help those affected by rare diseases navigate the complexities of their conditions.
- Family Support and Resources: This includes assistance with medical care, financial aid, and emotional guidance.
- Akari Resources & Support Program.
- Akari Ambassadors (Includes ten free sessions with a licensed psychologist).
- Akari Diagnosed kit. (backpack program with educational materials in Spanish)
- Akari Aid Program for Urgent needs (providing medical equipment in USA, MX & LATAM)


RAISE AWARENESS: The Akari Foundation raises awareness about rare diseases, concentrating on the Hispanic community's unique challenges. We strive to eliminate the stigma surrounding these conditions through targeted campaigns and events and foster a more compassionate and understanding society. We work assiduously to raise awareness and advocate for change, ensuring that the needs and rights of individuals with rare diseases, including Duchenne muscular dystrophy, are recognized and addressed.


ADVOCATE: Our organization actively lobbies for policy changes at various levels of government, advocating for improved access to healthcare, treatment, and support for individuals with rare diseases, mainly focusing on the Hispanic population.
- Advocacy, DEI, and Awareness of Rare Diseases & Duchenne Programs: Advocacy, Diversity, Equity, and Inclusion are at the core of our efforts.
- Advocacy, Diversity, Equity, Inclusion, and Awareness of Rare Diseases & Duchenne Programs.
- Akari Advocacy and Public Policy Program
- Akari Outreach & Awareness.
- Akari Legal Support & IEP Program


EDUCATION IN SPANISH: We remain the ONLY organization in the USA dedicated to providing information entirely in Spanish, ensuring that language barriers do not hinder access to crucial resources and knowledge. This commitment underlines our aim to make our programs more accessible and inclusive.

We are a group of parents with kids with Duchenne, with a wide array of backgrounds including medical training, marketing, production, business and contracts; together we hold a passion for our mission and vision. We have created a globally-dispersed multicultural team of bilingual people to help us reach the families, and we are collaborating with other national and international foundations to gain different perspectives and have a well-rounded approach to developing programs for our Hispanic community.

Akari has hosted several in-person workshops and provided free admission, inclusive of meals, to patients and their care team. These workshops provide an opportunity for families to meet and ask medical-related questions with expert physicians, hear about current research and approved therapies and connect to a community for the first time, all of which results in receiving crucial support by removing financial, language, and geographical barriers.
Akari's virtual educational webinars and social media has provided crucial education, information, resources and support to our families, reaching over 440,000 digital impressions across the globe in 2023 alone!
Additionally, Akari has directly connected over 1,100 non-English speaking families to programs, doctors and other support services.
Our team of translators has done excellent work connecting families with the appropriate services and helping them read and translate documents and we provided much-needed translation services to Cure Duchenne. We have partnered with several other industry leaders like the Rare Disease Foundation, NORD, the Muscular Dystrophy Association and, recently, Angel Flights, to expand our reach and our services.

To date, Akari offers a variety of programs tailored to the needs of our community: The Akari Resource Program, The Akari Rare Disease Educational Program, The Akari Ambassadors, The Akari Diagnostics Kit, The Akari Legislative Advocacy Program, The Akari Grassroots Outreach and Awareness Program, The Hispanic Database and Patient Engagement for Equality and Inclusion program, The Akari Supplement Kit and The Akari Lawyers Support program.
Our Futures RoadMap includes strengthening our existing programs while simultaneously expanding in the areas of Research, Advocacy and Nutrition.
If you want to know more about the programs, visit our website TheAkariFoundation.org.