Intestinal Malrotation Research Alliance

02/28/2026

02/28/2026

Today is Rare Disease Day!

While intestinal malrotation may not be considered ultra-rare, many families still struggle to find providers who have identified or cared for more than a small handful of patients with the condition. That reality creates real challenges.

Malrotation is common enough that we need far greater awareness. Its signs and symptoms can be vague, intermittent, and easily attributed to other conditions. When the diagnosis is missed or delayed, the consequences can be devastating.

At IMRA, our #1 research priority is clear: identify better, faster ways to diagnose malrotation. Earlier recognition means earlier intervention and better outcomes for patients and families.

Check out our news story here:

On Rare Disease Day, observed each year on February 28, the Hudson College of Public Health is proud to highlight one of its leading research centers dedicated to improving the lives of individuals affected by a rare and often misunderstood condition: the Intestinal Malrotation Research Alliance (IM...

02/27/2026

In honor of Rare Disease Day (February 28th), we’re launching a special IMRA online pop-up apparel shop!

Grab your IMRA t-shirts or hoodies, and help raise awareness for intestinal malrotation and show your support for the rare disease community.

Our shop closes March 3 — don’t miss it!

Every purchase helps spark conversations, increase visibility, and strengthen our growing community of patients, families, clinicians, and researchers.

Shop now: https://undergroundshirts.com/groups/imra-apparel-1

01/15/2026

Today is Intestinal Malrotation & Volvulus Awareness Day

Intestinal malrotation is a rare congenital condition that can lead to life-threatening volvulus if not recognized quickly. Symptoms can appear at any age and may include severe abdominal pain, vomiting (especially bilious/green), failure to thrive, feeding difficulties, and ongoing gastrointestinal issues.

Learn more about malrotation and our research efforts at malrotationresearch.org.

09/24/2025

Exciting News! Our team’s latest peer-reviewed article led by Dr. Katie Corcoran has just been published in the Journal of Pediatric Gastroenterology and Nutrition!

🔎 The study focuses on long-term gastrointestinal outcomes in pediatric intestinal malrotation patients following operative treatment—a topic that has major implications for patients, families, and clinicians.

✅ The article is published open access, meaning it’s free to download and share.

We’re proud to continue advancing patient-centered research to better understand malrotation and improve care.

Read the full article here: https://doi.org/10.1002/jpn3.70204

06/04/2025

This week, IMRA was in Washington, D.C. attending the National Organization for Rare Disorders (NORD) Rare Disease Scientific Symposium, contributing to national conversations on innovation in rare disease research.

Dr. Sydney Martinez was invited to speak on a panel titled “Integrating Patient-Centric and Real-World Data to Advance Rare Disease Understanding.” She discussed the development of the IMPOWER national patient-generated registry, the integration of real world data using medical records, and our collaborative efforts to advance a patient-driven research agenda for intestinal malrotation.

Dr. Katie Corcoran also attended the Symposium, and IMPACT advisor Michelle Gerlowski was able to drive in for a quick visit as well.

Thank you to NORD for amplifying the importance of patient-centered research in the rare disease community!

05/23/2025

Join us in congratulating our amazing student, Joanne Albert, MPH on successfully defending her practicum and finishing her Master of Public Health degree in Epidemiology!

During her time with the Oklahoma Birth Defects Registry, she:
📊 Calculated birth prevalence for intestinal malrotation in Oklahoma, which was 2.95 per 10,000 live births, or 1 in 3400
🔍 Examined co-occurring birth defects and found that 71.6% of cases had at least one other co-occurring birth defect
📦 Created resource packets that the Birth Defects Registry will send to families navigating a new malrotation diagnosis

We’re so proud of her contributions to advancing science and and creating resources for the malrotation community!

04/16/2025

04/15/2025

Last call for photos in order to be included in the IMRA Research Summit Slideshow!

📸 Help Us Celebrate Our Patient Community! ♥️

We’re creating a special slideshow for the upcoming Intestinal Malrotation Research Summit 2025—and we’d love to include photos of those in the intestinal malrotation community.

Whether it’s a baby photo, a hospital moment, an everyday pic, or a milestone memory—we want to honor the strength, stories, and spirit of our community.

👉 To be included, comment or send us a DM.
✨ Feel free to include a name, age, or short caption if you’d like!

Don't forget to register: malrotationresearch.org/2025-annual-meeting

04/15/2025

Speaker Spotlight: Moving Forward After Surgery
How does abdominal surgery — like the Ladd procedure — impact a child’s development? At the IMRA Research Summit 2025, a pediatric physical therapist will share insights on:
✔️Developmental care after the Ladd procedure
✔️Supporting motor skills, movement, and milestones
✔️Helping families navigate recovery and long-term growth
Only 2 more days to register. Learn more at https://malrotationresearch.org/2025-annual-meeting/

04/14/2025

Session Spotlight: Managing Pain, Healing Better 💚

Pain management after abdominal surgery in babies and kids with malrotation is complex — and deeply personal.

At the Intestinal Malrotation Research Summit 2025, hear from Dr. Jordan-Lee Slowik, a pediatric nurse and a caregiver of a child with malrotation share perspectives on:

🍼 Challenges in managing neonatal and pediatric pain
💡 Strategies for safer, more effective, and compassionate care

Don’t miss this important conversation at the intersection of clinical care and lived experience.

https://malrotationresearch.org/2025-annual-meeting/