ACTION is excited to release our first patient and family education handbook focused on Heart Failure Success!
NEW! Heart Failure Success Patient & Family Education Handbook Read More »
Ventricular assist device (VAD) use for failed stage II palliation (S2P) is increasing with limited data on outcomes.
The HeartWare ventricular assist device (HVAD) was discontinued in July 2021. The study aims to describe the impact the discontinuation the HVAD had on pediatric ventricular assist device (VAD) utilization and outcomes.
We’re excited to introduce this valuable roadmap resource tool to help provide recommendations on routine Fontan surveillance and when to refer for heart failure/transplant care. A referral does not necessarily mean
Fontan Surveillance Resource Tool Read More »
Patients with Fontan failure are high-risk candidates for heart transplantation and other advanced therapies. Understanding the outcomes following initial heart failure consultation can help define appropriate timing of referral for advanced heart failure care.
Outcomes after initial heart failure consultation in Fontan patients Read More »
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 defied the odds of a complex disease. From diagnosis to treatment, and now recovery, Ricky goes everywhere, experiencing life to the fullest.
Care Across State Lines: Ricky’s Journey to Life-Saving Surgery Read More »
We’re excited to introduce these valuable tools and resources, designed to empower and inform those navigating the challenges of Muscular Dystrophy. Stay tuned to see how ACTION is working to
Muscular Dystrophy Resource Tools Read More »
Prompted by needs and interests of our Families in ACTION (FACT) Committee, ACTION recently joined forces with a fellow Cardiac Networks United organization, the Cardiac Neurodevelopmental Outcome Collaborative to: develop patient
Hearts & Minds: Neurodevelopment in Pediatric Heart Failure and VAD Patients Read More »
Check out ACTION’s Pediatric Heart Failure Toolkit. Download patient and care team friendly handouts below. Providers For more tools, including a Heart Failure Daily Communication Checklist and a Heart Failure Discharge Plan login
Pediatric Heart Failure Toolkit Read More »
Happy Fall! We are looking forward to seeing you virtually during our Fall Meeting on Tuesday, November 8, from 1–5pm ET. Registration details are included below.
We have had a busy couple of months since our last newsletter in July, including the pilot launch of the Heart Failure registry, a successful Fontan Referral design meeting, and reaching over 1,000 patients entered into our VAD Registry. Join us for our Fall Meeting to see what’s coming for the rest of 2022!
The Pulse — October 2022 Read More »
