About US

the Foundation

Bringing Hope Through Science, Support, and Connection.

Situs Foundation Inc. is a nonprofit organization dedicated to supporting families affected by Situs Inversus — a rare congenital condition in which the internal organs are mirrored from their normal positions.

Our mission is to advance medical research, raise awareness, and offer resources and compassionate outreach to families navigating this unique diagnosis. We believe every family deserves answers, support, and community.

Mission

SITUS foundation Inc works to create avenues for collaboration, allowing healthcare professionals and the public to access up to date medical education resources, support groups, and funding opportunities to alleviate the burden of healthcare costs as well as to empower professionals to initiate clinical studies and develop evidence-based solutions.

Vision

A world where situs inversus patients and families feel supported, situs inversus is better understood by innovative research, and medical education is readily accessible to the public.

Core Values: advocacy, health literacy, innovation, and awareness

Goals

To provide patients and families affected by situs inversus and other rare genetic conditions with a therapist to run support groups. Enhance medical education available to the public to create awareness and updated information. Also to provide funding opportunities to alleviate the burden of healthcare costs for patients and families as well as being able to initiate clinical studies and develop evidence-based solution.

We have been able to provide familes and patients with support, constructing a database, collaborations with researchers and genetic counselors for our rare community, advocacy, and enhance medical education resources.
We have proudly donated Medical ID Bracelets to toddlers, children, and adults worldwide who are impacted by situs inversus and rare conditions to promote awareness, confidence, and safety. These bracelets serve as a vital lifeline during emergencies, ensuring that medical professionals are informed of their unique anatomical needs.
We offer support groups and story sharing circles to promote mental health which is often overlooked for the rare population. Our goal is to offer therapeutic coaching.

why it was founded, Bug’s Story

SITUS Foundation was formed and inspired by the extraordinary diagnosis of our son, whom we lovingly call “buggy” short for love bug. Our mission is to enhance available education resources, research innovation, awareness, advocacy, donations, support groups, outreach, create a sense of community, as well as assist with the mounting medical expenses those impacted by situs inversus and rare genetic conditions incur. With our Medical and Scientific Advisory Board and International Patient and Family Advisory Board-science and lived experience come together to shape our projects and resources in this rare disease space. Our awareness and community outreach programs help inform the public on this important condition and how they can get involved. With 1 in 10,000 people diagnosed worldwide with situs inversus it is estimated that approximately 825,000 people are impacted. This foundation is my love letter to all of the patients, parents, and families experiencing this condition-We see you, we support you, we are here for you. Thank you for being a part of this journey and helping us make a transformative difference.

Message from the founder

As we reflect on this past year, we are proud of the strides our non-profit organization has made in the furthering of our mission to create avenues for collaboration, allowing healthcare professionals and the public to access up to date medical education resources, support group, and funding opportunities to alleviate the burden of healthcare costs and that empower them to initiate clinical studies and develop evidence-based solution. In 2024 the Situs Foundation Inc was created, although in its infancy we have been able to empower parents and those impacted giving them the tools they need to be informed, confident, supported, and thrive.

We would like to extend our deepest thanks to our donors, partners, and board for making 2024 a year of developmental growth-and as we continuing to grow in 2025. Together, we are creating lasting change and making a transformative difference.