SITUS Foundation

05/07/2026

Big conversations, real impact.

We were honored to sit down with the NIH to discuss our utilization of Kids First Data and how collaborative data sharing is unlocking meaningful insights into rare diagnoses—bringing visibility to conditions that have historically been overlooked or misunderstood.

In the rare community, time is everything. Yet the path from discovery to publication can take 1–3 years on average, and the journey from research to real-world clinical impact can stretch to over 15 years. These delays mean critical data often isn’t reaching patients, families, or providers when it’s needed most.

Through initiatives like Kids First, we’re helping shift that timeline—accelerating access to data, amplifying patient voices, and turning lived experiences into actionable knowledge.

Because faster data means faster answers. And for rare families, that can change everything.

https://commonfund.nih.gov/KidsFirst/highlights/using-kids-first-data-navigate-rare-disease-parents-perspective-kids-first

When a child is diagnosed with a rare condition, parents are often thrust into an unfamiliar world. For Dana Maier, a clinician and parent-advocate, the journey began when her child was diagnosed with situs inversus, a rare condition that reverses the location of organs in the body.

04/06/2026

🌍The SITUS Foundation is proud to announce that applications are now open for our International Donated Medical ID Bracelet Program.
Medical ID bracelets play an important role in helping individuals with situs inversus and related laterality conditions communicate critical medical information during emergencies.
Through the generosity of our community, we are able to provide a limited number of donated medical ID bracelets to individuals and families who may not otherwise be able to obtain one.
This program aims to support patients while also sharing the lived experiences of our community to raise awareness about situs inversus.
Program Highlights
• Open to international applicants with situs inversus or related conditions
• Children must be 3 years or older to participate
• Applicants must demonstrate financial need
• Selected recipients will be invited to share their situs inversus story in a SITUS Foundation community highlight
• Adult recipients will be able to select from two bracelet design options
Because bracelets are limited, applications will be reviewed carefully to ensure they reach those who need them most.
📄 Apply here: https://situsfoundation.org/philanthropy/

03/30/2026

SITUS Foundation encourages members of the Situs Inversus community to apply for the Scholarship Fund.

Powered by the EveryLife Foundation for Rare Diseases, 58 scholarships of $5,000 will be awarded to individuals with rare diseases pursuing higher education for Fall 2026. Recipients may also participate in a mentorship program, learning sessions, and advocacy opportunities.

Learn more and apply at RareScholarship.org. Applications close April 28 at 2 PM ET.

03/25/2026

We’re honored to be recognized as a Business Partner Award recipient by Child & Family Resources at their S.H.I.N.E. Educator of the Year Awards 💛

Grateful to support an organization that uplifts educators and strengthens families—values we deeply share at SITUS Foundation.

Congratulations to all of this year’s inspiring honorees 🎉

Thank you for the kind introduction Assemblyman Brian Bergen and our entire SITUS Foundation team!


https://www.instagram.com/reel/DWUZvXlkfGO/?igsh=aDgxMnRucWp1MmFynu

03/11/2026

SITUS Foundation Medical ID Bracelet Application is Now Open!

The SITUS Foundation is proud to announce that applications are now open for our Donated Medical ID Bracelet Program.

Medical ID bracelets play an important role in helping individuals with situs inversus and related laterality conditions communicate critical medical information during emergencies.

Through the generosity of our community, we are able to provide a limited number of donated medical ID bracelets to individuals and families who may not otherwise be able to obtain one.

This program aims to support patients while also sharing the lived experiences of our community to raise awareness about situs inversus.

Program Highlights

• Open to individuals in the United States living with situs inversus or related conditions
• Children must be 3 years or older to participate
• Applicants must demonstrate financial need
• Selected recipients will be invited to share their situs inversus story in a SITUS Foundation community highlight
• Adult recipients will be able to select from two bracelet design options

Because bracelets are limited, applications will be reviewed carefully to ensure they reach those who need them most.

📄 Apply here: situsfoundation.org

We look forward to continuing to support and amplify the voices of the situs inversus community.

03/04/2026

We extend our gratitude to the West Milford Rotary Club for their generous support of our charitable endeavors. This grant will enable us to sustain our initiatives in education, outreach, and patient and family support. We are deeply appreciative of this recognition and reaffirm our commitment to our mission. Thank you for hosting us during our recent visit and for your tireless efforts in serving our community.

03/01/2026

We finished our Rare Disease Week at the NIH. It was a real full circle moment. I presented my scientific poster using Gabriella Miller Kid's First Data-which is a NIH funded database for pediatric research. During this day powerful presentations took place on lived experience, innovation, and gene therapy! We also had the opportunity to connect to the very people in the NIH who created and developed kid's first data and were able to give feedback on their services 📊 We made connections with world renowned NIH scientists, researchers, and physicians. I had the opportunity to ask the esteemed Dr. Kiran Munsunuru for his insight on gene therapy for genetic lung diseases, he believes this is the next step in gene therapy research. We also had the pleasure of getting to meet Baby KJ and his mother who received gene therapy for a rare condition that was fully treated as a baby! If you are not familiar with his story please read as his treatment is the future of medicine and genetics 🧬

03/01/2026

Happy Rare Disease Day 🦓💗 Read the full article in the link below ⬇️

This Rare Disease Day, we’re proud to share the story of baby Michael, who was born with a rare condition called situs inversus. When Dana was pregnant with her first child, she looked forward to the milestones of motherhood — her first perinatal visit, her first ultrasound image and hearing her baby’s heartbeat for the very first time. Instead, she and her husband received unexpected news: their baby’s heart was growing on the right side of his chest, not the left. Michael’s condition is extremely rare and is often associated with congenital heart defects, respiratory disease, immune system challenges and spinal abnormalities — complications Dana and her husband hoped to rule out after delivery.

Michael was born in Spring 2024 and spent his first four days of life in the Neonatal Intensive Care Unit at Atlantic Health Morristown Medical Center. During that time, doctors ruled out several serious complications commonly linked to situs inversus. He also underwent extensive testing, including echocardiograms, X-rays, blood work and a full genetic workup.

Today, at almost two years old, Michael is a joyful, energetic toddler who is exceeding his developmental milestones. https://bit.ly/4rPvtG4

02/28/2026

📍Rare Disease Congressional Caucus Briefing

02/28/2026

Day 2 of us attending Rare Disease Week we had the privilege of meeting our legislators and sharing our stories. Patients, families, and advocacy groups got to share their experiences with healthcare, their challenges, and the burden often we face navigating a rare diagnosis. We shared our story of our son and his 15 specialists he sees, 68 doctors appointments for follow-up in only the first year of life with Situs Inversus and his related conditions-as well as his ability to say "copay" before even being 2 years old. The cost of healthcare, high copays, genetic testing barriers, and caregiver challenges with balancing work and appointments. It was moving to see so many other parents and children here fighting for their children as well as young adults advocating for their own health. Our meetings were well received, we were welcomed warmly-and I can say our legislators truly do care about these important issues.