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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health, Heart & Circulatory System Diseases & Disorders

Mission: The Adult Congenital Heart Association (ACHA) is a nonprofit organization that seeks to improve the quality of life and extend the lives of adults with congenital heart defects. Through education, outreach, advocacy, and promotion of research, ACHA serves and supports the more than one million adults with congenital heart defects, their families and the medical community.

Results: Below are ACHA’s 2015 programming outcomes. • More than 800 ACHA members attended 17 different webinars in 2015. In addition, archived webinars are available on demand on the ACHA website and have had over 5000 views in 2015. • More than 115 advocates from 19 states gathered in Washington, D.C., on February 25-26, 2015 to talk to their lawmakers about CHD. • 17 new Ambassadors were trained, bringing the total to 73 Ambassador volunteers. These volunteers offered over 1,200 ACHA patient and family members personalized information and support. • More than 186,000 website sessions in 2015. This included more than 141,000 users, accounting for over 382,000 page views. • ACHA Facebook membership increased steadily through the year, from 5,735 people to 7,323 by year’s end – an increase of nearly 28%. • Congenital Heart Walk’s sixth year, over 15,000 walkers raised more than $1.9 million in 30 locations across the United States • ACHA published 93 posts from more than 20 bloggers, which were viewed approximately 58,000 times. • In 2015 ACHA Ambassadors and staff presented on the importance of lifelong cardiac care at over 20 events. Hundreds of CHD patients and families received this carefully crafted message. • There were more than 9700 topics and 92,000 posts on ACHA Discussion Forum.

Target demographics: Adults living with congenital heart disease, their families, and medical providers who serve congenital heart disease patients

Direct beneficiaries per year: over 15,000 people

Geographic areas served: United States

Programs: Heart to Heart Ambassador Program, Regional Events and National Conferences, Webinars, Discussion Forum, Adult Congenital Heart Disease Program Directory, Online and Printed Material, Congenital Heart Walks, Advocacy and Professional Programs; CHD Fellowships and ACHD Accreditation

Community Stories

8 Stories from Volunteers, Donors & Supporters

Kristin69

Client Served

Rating: 5

I was unexpectedly diagnosed with a hole in my heart as an adult, and I had no idea where to start to find information. I stumbled upon the Adult Congenital Heart Association, and they were helpful from the very first time I reached out. The organization (and Paula in particular) helped to connect me to the right doctors in my area, and the forum allowed me to voice my concerns and fears of being a first-time heart patient and get helpful feedback from long-time heart warriors. I am indebted to the wealth of information that the ACHA was able to provide me at a time when I truly needed it.

1

Client Served

Rating: 5

VITAL to an underserved population, ACHA has been a huge advocate for awareness, sensitivity and compassion. I've benefited from the expertise of ACHA for over 10 years and seen it grow from a great intention to a primary source of information, advocacy and support. Every person involved is more than just an employee or a board member or officer - they genuinely believe in reaching out to the communities on both a local and national level. Medical institutions across the country are expanding their services to adult congenital heart patients because this organization is bringing them together. Medical professionals and patients alike are receiving outstanding support!

1

Client Served

Rating: 5

ACHA has been a powerful tool in aiding me with research, answers, physicians and others with same defects. I'm an adult with CHD since 1965, this has been my ticket to confidence and education..Thank you for being available and my secruity blanket!!

1 Lynne12

Client Served

Rating: 5

I was told in 1972 that my congenital heart defect had been fixed with surgery and the only future treatment I would need was antibiotics when dental work was done. In 2006 I developed new symptoms that local cardiologists could not figure out. A newspaper article about ACHA led me to expert treatment and complete recovery. This organozation is helping thousands and will change the standard of care for all current and future congenital heart defect patients.

1

Client Served

Rating: 5

I became involved with ACHA because I have two adult daughters with single ventricles. I have attended two conferences, and have come away impressed, inspired, and informed by the energy and leadership shown by the organization, its board, and the many cardiologists and surgeons who are dedicated to finding new ways to treat the adults who have grown up after having lifesaving heart surgery as children. I could go on and on. ACHA has brought me hope, information, and comradeship. The conferences bring together doctors and patients who interact over lunch and coffee breaks, as well as during presentations. It's a much needed and very well-led organization!

1 Lisa135

Client Served

Rating: 5

I found ACHA after the death of my son who was an adult with congenitalfrom heart defects. I think that if I'd known about the organization before, he'd still be alive. The wealth of accurate information from ACHA is invaluable. The ACHA is truly a lifeline for this large population of people that have very little access to accurate, relevant information. The organization is outstanding in it's scope of advocating for the broad needs of this community, from informational support, emotional support, to lobbying and educating our lawmakers in order to obtain much needed funding for the chd population.

Lena M.

Client Served

Rating: 5

The Adult Congenital Heart Association has taken an essential role in my life as an adult with Congenital Heart Disease! They keep me informed of the latest news and medical advancements concerning CHD. When I was preparing for a third open heart surgery, the support and information provided to me facilitated my determination to have the surgery and fully recover. Their passion to make a difference is clear. I'm grateful for ACHA who helped me though health issues, surgery and made it possible for me to meet other adult patients all over the world. They have made a huge impact on my life and have consistently encouraged me to be pro-active in my health!

Review from Guidestar

Client Served

Rating: 5

ACHA has raised my awareness for the need of this specialized care. Because of ACHA I was able to learn of the most common and serious complication of my heart defect. When I experienced one of these complications I acted quickly and call the paramedics. The doctors said my fast action saved my life. ACHA help save my life. I also saw an Adult Congenital Specialist this year. This will again change my life. My former "regular" cardiologist was satisfied with my activity intolerance and told me I was doing fine. He gave me no explanation for it. My ACHD Dr. found a leaky pulmonary valve. I will have surgery this year. I will be able to RUN with my grandchildren. Truly Lifechanging!

Review from Guidestar