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Leadership Update: Addressing the Crisis in Access to ACHD Care

This is the leadership update from August's e-newsletter.

Since 1998, ACHA has spoken out about the crisis in access to ACHD care. Although there are more than 3,000 pediatric cardiologists nationwide, there are currently no more than 100 specially-trained ACHD cardiologists, despite the fact that care guidelines jointly published by the American College of Cardiology and the American Heart Association state that every person born with complex congenital heart disease should receive lifelong care from CHD specialists. Most survivors of complex congenital heart disease have either dropped from cardiac care or are being cared for by cardiologists without training in their special needs.

Every day, ACHA reaches out to educate patients, families, and providers about the importance of special ACHD care, and helps them find it via our ACHD Program Directory. However, the gap between the handful of current ACHD specialists and the number we need to take care of this nation’s more than 1 million ACHD survivors remains daunting.

But this month, ACHA began addressing this problem through an exciting new activity: the ACHA Actelion Fellowship Award. Thanks to generous support by Actelion Pharmaceuticals, ACHA will fund two ACHD programs each year to train ACHD subspecialty fellows. Funding will be directed to new and emerging ACHD programs that demonstrate a long-term commitment to ACHD subspecialty training. In this way, we hope to accelerate national ACHD training and ensure that more ACHD patents can access the care they need. To find out if your program is eligible to apply, click here. And watch your inbox for more information about the ACHA Actelion Fellowship Award coming soon!

Will the funding of ACHD fellows mean that ACHA will need to cut back on other programs and services? Not at all—for the remainder of 2013, and throughout 2014, ACHA will continue to sustain and expand all the services we offer to the patient, family, and professional community. Of particular note are upcoming webinars on insurance, Ebstein’s anomaly, and other pertinent CHD topics; ACHA regional events, such as the upcoming one in Philadelphia; and the PATCH professional training sessions in Michigan and Ohio. And of course, I am looking forward to seeing all of you at the upcoming ACHA National Conference in Chicago from September 5-7, 2014!

Sincerely,

Amy Verstappen
ACHA President/CEO

Posted on Wednesday, August 14, 2013

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