Our Patients

We are here to guide you on every step of your heart journey.


All united through the heart, ACTION’s global community is ready to help. When we share our stories, information, and resources, we can increase awareness, support, and funding for pediatric heart failure.

Ready to start your heart success journey?

Heart failure can be complicated and frightening – but it doesn’t need to be. Discover treatment options, understand your diagnosis, and learn about new therapy innovations by visiting My ACTION Education.

This site is free for patients, families, and caregivers. Email us with any questions.

Join FACT (Families in ACTION)

FACT is a diverse group of patients, parents, and caregivers whose perspectives and experiences guide ACTION’s quality improvement projects. Real-world data and lived experiences drive how ACTION chooses its projects and initiatives.

Fill out and send in this form to nominate yourself or someone you know to join FACT!

I wanted to be involved with ACTION as a parent to help other people understand what this journey is about and that they're not alone.


ACTION is what's possible when heart failure teams collaborate with each other, patients and families, and the community. That progress and transparency make it possible not only to save lives but to encourage all pediatric heart care in ways we never thought possible. I very much look forward to the future being built for our heart kids. A brighter future.


It really makes me happy to see that ACTION has created better options for families that have long waits for transplants.


We learn, grow, and succeed by listening to others.

Open your heart by exploring our patient, family, and member stories.
Patient StoriesStories

Defying the Odds: Riley’s Life with Duchenne

On any given day, you may find Riley watching live sports in his home state of Montana. You may not know that Riley has been ...
Patient StoriesStories

Care Across State Lines: Ricky’s Journey to Life-Saving Surgery

Ricky was diagnosed with Duchenne Muscular Dystrophy (DMD) within the first year of his life. With the unyielding support of his mother, Rosie, he has ...
Patient StoriesStories

From ACTION Patient to Summer Intern: Sam’s Story

You may recognize her as our homepage cover girl on the actionlearningnetwork.org website, but now all grown up, Sam is pursuing a biology and pre-med ...

<<  See all stories  >>

Support Organizations

Whether it’s in-person or on virtual platforms, support groups are a great place to connect and share your heart failure journey experiences. See below for organizations and communities that may be helpful or talk to your care team about local support groups.*

Know something we don’t?

Do have a suggestion for other resources? Or is there a resource that has helped you?

Send us a message and let us know so we can share it with our community!

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