Action Learning Network

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Action Learning Network

Patients, families, doctors, nurses, researchers, and industry working to improve outcomes for children and ACHD patients with heart dysfunction

06/22/2026

As care continues to evolve in Duchenne muscular dystrophy (DMD), early cardiac management remains essential.

Cardiac disease often develops before symptoms appear, which makes routine surveillance and longitudinal care critical.

At ACTION, we’re focused on:
🔹 Earlier recognition of cardiac involvement
🔹 Consistent monitoring strategies
🔹 Coordinated, multidisciplinary care

Because earlier recognition creates the opportunity for better outcomes.

Learn more here: https://bit.ly/4tFdQIM!

06/17/2026

🌴 We hope to see you this week in Fort Lauderdale at ! Don't miss the ACTION abstracts being presented this week!

Final presentation details can be found here: https://bit.ly/43G3MoE!

06/15/2026

Rounding out our presentations, Dr. Drishti Tolani of Cleveland Clinic Children's shares findings from an ACTION registry analysis identifying predictors of major adverse events following HeartMate 3 implantation in pediatric patients. Don't miss her presentation on June 18 at 5:10pm.

Learn more here: https://bit.ly/4fNoiLd.

06/10/2026

The ACTION Data Coordinating Center is now accepting proposals for ISHLT 2027 abstracts! 📝 To be considered for approval, proposals must be submitted by June 30, 2026. Have questions about proposals or the submission process? Email us at [email protected].

NOTE: Submissions close slightly earlier this year.

Submit your proposal here: https://bit.ly/43qJEH0!

ISHLT

06/08/2026

Meet our next speaker, Caio Freitas of Cohen Children's Medical Center! His abstract explores the impact of fungal infections during VAD support. You can hear his presentation on June 18 at 4:20 PM.

Learn more here: https://bit.ly/4ofANkZ!

06/01/2026

We’re gearing up for and excited to highlight ACTION work being presented at the meeting!

First up - Dr. Kriti Puri of Texas Children'swith a poster on the STOP-CS Severity Classification, a new pediatric cardiogenic shock staging system to better define severity and track clinical trajectory.

Catch it on display Thursday and Friday at the conference! Learn more here: https://bit.ly/4veT586!

05/28/2026

Making waves in Fort Lauderdale 🌊

Join us in congratulating the 3 ACTION members presenting at next month! We’ll share more about each presentation as we get closer.

ASAIO Journal

05/21/2026

🌴Less than one month to ASAIO 2026! 🌴

Make plans to join us June 17-20, 2026 in Fort Lauderdale - there’s still time to register.

Don’t miss key pediatric sessions:
• Pediatric Medical Device Day (June 17)
• Adult ACTION Connection (June 18)

Learn more here: https://asaio.org/conference/.

05/20/2026

What if life on a ventricular assist device (VAD) could mean more mobility for kids?

A new ACTION study, published in JACC, evaluated the Berlin Heart EXCOR Active Driving System - a novel approach designed to improve portability and better adapt to a child’s changing physiology.

The study, which included 158 pediatric patients across 14 centers, showed excellent short-term outcomes, including a 98.1% survival rate at 90 days.

These results highlight the reliability of this next-generation system and point toward a future where children on VAD support may experience greater mobility and improved quality of life.

Learn more here: https://bit.ly/3OZAFZO!

05/18/2026

This month, we recognize the many mothers impacted by Duchenne muscular dystrophy (DMD) including carriers, who are an essential but often under-recognized part of the DMD community.

While Duchenne primarily affects boys, many carriers are at risk for cardiac involvement, including cardiomyopathy.

At ACTION, we are committed to advancing cardiac care across the full spectrum of Duchenne by supporting:
🔹 Early screening for carriers
🔹 Ongoing cardiac surveillance
🔹 Access to specialized care

Because caring for Duchenne means caring for families, too. Learn more here: https://bit.ly/4tFdQIM.

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http://www.actionlearningnetwork.org/

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