Adult Congenital Heart Association Inc

Rating: 4.94 stars   16 reviews

Issues: Health, Cancer

Location: 6757 Greene Street Suite 335 Philadelphia PA 19119 USA

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 2012 programming outcomes. • 900 members attended one of 16 educational webinars. • 2,100 congenital heart disease advocacy actions were made by ACHA members. • 600 one-on-one member contacts were made by our Heart to Heart Ambassadors to provide support and information. • 200 congenital heart disease patients were contacted by an Ambassador providing unique peer support. • 52,000 people visited ACHA’s website – www.achaheart.org. • Facebook membership increased from 1,905 to 2,793 – an increase of 46%.
Target demographics: Adults living with congenital heart disease, their families, and medical providers who serve congenital heart disease patients
Geographic areas served: United States

2012 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

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!

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

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!!

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2010

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Role: General Member of the Public
Rating: 5 stars  

My daughter was born in 1983 with serious complex heart defects. Today she is 29 years old. This site has helped with transition from pediatric to adult doctors. We have used the directory to find good ACHD doctors.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

I'm the mom to a 13 year old girl who has a heart defect. I pray everyday that she will grow into an adult with a CHD. I like to read the blogs & watch the webinars to gain insight on what the future holds for her.

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

Our late son,Steve Catoe was very much involved with ACHA.The great people in this organization meant so much to him ACHA is managed by great people. We continue to support ACHA in his memory.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

I'm an RN, specializing in pediatric cardiac intensive care - and I also am an adult with a congenital heart defect! I found ACHA a few years ago when I was searching for adult congenital heart clinics for myself. Their website offers lots of information for patients and families, as well as medical professionals. Their "health passport" and clinic directory as great resources. I especially enjoy reading the blog, because the stories truly reflect common thoughts & feelings shared by many CHD patients. I often recommend the ACHA website to my own patients and their families!

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

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.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

ACHA has changed my life. When I found out about the need for a second surgery in my late 20s, I was overwhelmed and felt very alone. I knew little about my condition, and had never met another person who understood on a personal level. My cardiologist introduced me to ACHA and the change has been dramatic. From raising awareness, to education to simply connecting those who understand, ACHA makes a difference. I'm so happy to have found the blogs, the fundraisers which bring us all together and the wealth of knowledge on their site.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful?