CALL TO ACTION: Help Us Make September 21st Official!
International Situs Inversus Awareness Day is approaching, and the SITUS Foundation is working hard to gain formal recognition and endorsement — but we can’t do it without YOU. 
Situs Inversus is a rare condition that deserves visibility, understanding, and advocacy. By raising our collective voice, we can help families, individuals, and the medical community get the awareness they deserve.
How you can help:
We’ve created a letter template you can send to your local, state, or national representatives urging them to recognize September 21st as International Situs Inversus Awareness Day.
Your voice matters. Your support matters.
Together, let’s make history for the Situs Inversus community.
Find your representatives at the links below
USA.gov – Find Your Elected Officials
https://www.usa.gov/elected-officials
House.gov – Find Your U.S. Representative
https://www.house.gov/representatives/find-your-representative
White House – Find My Representative
https://www.whitehouse.gov/find-my-representative/
#SitusInversus #SITUSFoundation #AwarenessDay #RareDiseaseCommunity #Advocacy #September21 #SupportAndAwareness
Our commitment extends to attending scientific symposiums, where we advocate for those with situs inversus and other rare conditions. By participating in these forums, we aim to raise awareness, promote research, and ensure that the voices of those affected are heard and valued. We have established a Medical and Scientific Advisory Board with healthcare professionals, physicians, and researchers to further our research and advocacy goals. We have also formed a Patient and Family Advisory Board that allows a family and patient inclusive environment to allow for a collaborative space to help guide our foundation. We are working on constructing a medical database that looks at the medical histories as well as lived experience to further research on this rare condition.
Research Symposiums 2025
SITUS Foundation is grateful to have attended with the National Organization for Rare Disorders, Inc. (NORD) for the Rare Disease Scientific Symposium in Washington, D.C. in June 2025. We have been able to discuss and advocate for Situs Inversus and rare conditions with those present from the FDA, NIH, University Medical Center Physician Specialists, Researchers, European Medicines Agency, Pharma, Biotech, Genetics, CRISPR/gene therapy, Non-Profit Organizations, Artificial Intelligence, and Informatics. This week was filled with powerful conversations, groundbreaking research, and deeply moving stories from across the rare disease community. We’re honored to represent the voices of those living with rare conditions and to advocate for better research, understanding, and care.
Thank you to NORD for convening such a visionary event—and to every patient, caregiver, and researcher working toward a future where no one is left behind.Together, we are rare—but not alone.
#SITUSFoundation#NORDSymposium#RareDisease#LivedExperienceMatters#RareButMighty#PatientDrivenScience
