We’re glad you found us

Welcome to the MED13L Foundation, a beacon of hope for families navigating the complexities of the MED13L Syndrome (Q87.85) diagnosis. We’re a nonprofit organization at the intersection of family, hope, and research.

We are driven by the passionate commitment of families impacted by MED13L Syndrome and the dedicated researchers who stand with them. Our core mission is to provide a warm and supportive community for those navigating a MED13L diagnosis.

Who We Are

Our Story

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Mission & Values

What we do, and why?

At the heart of our mission lies the crucial objective of understanding the MED13L gene and its intricate role in MED13L syndrome. Collaborating closely with the global scientific community, we are dedicated to unraveling the mysteries of this gene. With every research endeavor, we inch closer to not just effective treatments but a complete cure for MED13L syndrome.

Our coordination with researchers and scientists ensures that the brightest minds are working together and sharing valuable insights.

It’s essential for the medical community and the public to be aware of and understand the complexities of MED13L syndrome. An informed doctor or medical professional can make a significant difference in the early diagnosis, treatment, and management of the disorder. By focusing on educating these professionals, we aim to elevate the standard of care and improve the lives of those with MED13L syndrome.

When we amplify the stories, challenges, and triumphs of those affected, we not only garner support but also build a compassionate and informed society.

Knowledge is power, especially when faced with the challenges of a rare disorder. We strive to offer comprehensive educational resources for patients, caregivers, and loved ones. By providing the latest information, research findings, and expert insights, we empower the MED13L community to make informed decisions and better navigate their journey.

Achieving our goals requires more than dedication and hard work; it also requires funding. Our fundraising initiatives are pivotal in driving our mission forward. With each dollar raised, we can support more research, educate more individuals, and provide greater assistance to the MED13L community.

Our fundraising efforts are a testament to the collective power of community and the tangible impact we can make when we unite for a cause.

Join our network of supporting families and find support

United by Heart

We’re on a deeply personal mission.

Each member of our board carries a profound and personal connection to the mission we champion. The Med13L Foundation is more than just an organization or a cause for them; it’s a personal journey intertwined with the hopes, dreams, and well-being of their own children. This deeply-rooted commitment ensures that every decision made, every program launched, and every research endeavor supported is fueled by genuine understanding and an unwavering desire to make a difference.

Advancing Discovery

Our scientific and medical advisory board is consistently expanding.

Our Scientific Advisory Board is perpetually on the lookout for fresh perspectives, innovative approaches, and emerging expertise. Recognizing that scientific advancement thrives on collaboration and diverse thinking, the board actively seeks to invite new members who can bring novel insights to the table.

We raise money to advance research and spread awareness.