Program:
Education and Outreach
- Budget:
-
$613,368
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Adults
Program Description:
Through the Heart to Heart Program, ACHA offers a variety of educational resources to ensure that the adult living with Congenital Heart Disease has the tools they need to protect and improve their lifelong health and well-being
Program Long-Term Success:
ACHA’s Heart to Heart Program includes the ACHA Personal Health Passport, the ACHA Travel Directory; monthly Webinars; on-line and printed articles and brochures; the ACHA Update, a monthly e-newsletter; a moderated Discussion Forum; National Conferences, and a peer support program, the Heart to Heart Ambassador program.
Program Short-Term Success:
ACHA has hosted monthly webinars on a variety of topics pertinent to ACHD patient and/or family members since 2009. Printed materials are developed in conjunction with webinar topics. All new members have been receiving a packet of educational materials via postal mail since 2011.
Program Success Monitored by:
Chief Executive Officer, Chief Operating Officer, Program Director, ACHA Patient and Family Program Committee
Program Success Examples:
The Heart to Heart Ambassador program developed in 2010 continues to serve both patient and family members. ACHA patient and family membership continues to grow at a rate of more than 70 new members a month. A Parent Outreach Program was recently developed.
Program:
Advocacy
- Budget:
-
$51,292
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Adults
Program Description:
The Adult Congenital Heart Association advocates for improved data collection, research, secondary prevention and treatment options to improve and prolong the lives of those living with congenital heart disease.
Program Long-Term Success:
Since 2006, ACHA has developed report language and policy that passed into law.
Program Short-Term Success:
The CDC is developing a surveillance system to address the adult population of those living with congenital heart disease.
Program Success Monitored by:
Chief Executive Officer, Chief Operating Officer
Program Success Examples:
The Congenital Heart Futures Act, the first disease specific congenital heart disease legislation was passed into law in 2010, and funded as an individual line item in 2011. The Congressional Congenital Heart Caucus was formed in 2012.
Program:
Research
- Budget:
-
$175,123
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Adults
Program Description:
ACHA’s Research Program aims to build partnerships with national CHD researchers to further expand our understanding of ACHD issues, conduct and promote research that engages patients and other stakeholders and develop strategies that unite patients with medical professionals to promote patient empowerment and lifelong cardiac health surveillance.
Program Long-Term Success:
ACHA partnered with nationally renowned researchers to execute two large scale, multicenter research projects and will build upon these successes to request more federal funding.
Program Short-Term Success:
The Research Empowerment for Adult Congenital Hearts (REACH) project generated not only one of the largest congenital heart-specific data sources in the United States, but also the only known congenital heart disease data set compiled via health information exchange rather than double-entry of data.
Program Success Monitored by:
Chief Executive Officer, Chief Operating Officer, ACHA Research Committee
Program Success Examples:
An interactive tool that offers comparative information on more than 90self-identified ACHD clinics in the US and Canada (the project started with 50 clinics). As far as we know, it is the only resource of this type in the US. In fact, U.S. News & World Report’s “Best Children's Hospitals”utilizes ACHA’s program directory when awarding hospitals points toward their rankings. The survey and program responses are updated annually.