Adult Congenital Heart Association Inc
Adult Congenital Heart Association Inc
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About this organization
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 research, ACHA serves and supports the more than one million adults with congenital heart defects, their families, and the medical community.
About
Heart to heart activities: Heart to heart ambassadors: ACHA expanded the heart to heart ambassador program, an initiative that provides ACHA patient and family members with personalized information and support. There was an ambassador training in St. Louis, MO in 2018 with 18 new ambassadors trained. The current number of active ambassadors is 62. These volunteers offered over 1,200 ACHA patient and family members personalized information and support. As our ambassador numbers continue to increase, we are seeing an increase in matching requests. In 2018 we had 233 peer-to-peer support matches. Heart to heart where you are: Regional conferences four regional conferences were held in 2018: Spokane, WA; Hollywood, FL; Omaha, NE; and Berkley, CA. Each regional conference begins with a dynamic partnership with local patients, professionals, and institutions. The event is tailored to regional needs and can include: an educational presentation (topics include ACHA 101, ACHD overview, defect specific information, etc), group roundtable, and education materials and resources. ACHD care guidelines are reviewed at every session to encourage lifelong care. Approximately 509 patients and family members were served. ACHA webinar program: The ACHA webinar series continues to educate ACHD patients and families by presenting webinars on various interesting and timely topics. Approximately 2,375 ACHA members registered for 16 different webinars in 2018. In addition, archived webinars are available on demand on the ACHA website and have had more than 7,992 views in 2018. National experts spoke on a wide range of topics including why is dental care so important if you have congenital heart disease; what happens in the cath lab; coping with grief: loss of a loved one; understand genetics and heredity risk in congenital heart disease; 2018 ACHA guidelines: what you need to know; contraception in adult congenital heart disease; and anxiety management and stress reduction in the ACHD patient: techniques in anticipation of upcoming procedures. Webinars also covered topics such as ACHA advocacy and research. Lifelong care campaign: In 2018 ACHA, ambassadors and staff presented on the importance of lifelong cardiac care at over 26 different events. These included mended little hearts meetings, a community health fair, hospital cardiac care meetings, support group meetings and congenital heart walks, a partnership with the children's heart foundation. Hundreds of CHD patients and families received this carefully crafted message. ACHA discussion forum: A benefit of ACHA membership is the ability to participate in the online discussion forum. More than 8,100 members have access to this forum to discuss issues with other members in the ACHA community and to provide and receive support in a moderated and safe environment. There are more than 900 topics and 90,000 posts. ACHD program directory: In collaboration with the international society of adult congenital heart disease, ACHA expanded its online listing to more than 111 ACHD clinics in the United States and Canada; the directory continued to be the only resource of its kind available in the United States. Professional programs congenital heart disease training fellowships: In 2014 ACHA developed an application and review process to offer training awards to either one or two institutions with a commitment to high-quality adult congenital heart disease (ACHD) care. These awards will fund one fellowship at each institution or two fellowship years at one institution with a requirement of ACHD leadership and mentoring throughout the award period. Funding priority will be given to new and emerging ACHD training programs. Fellowship awards were processed in 2018. The awards were given to Vanderbilt University. The adult congenital heart association adult congenital heart disease accreditation program: In 2014 ACHA and members of the medical advisory board developed a process for accreditation with 99 different pieces of criteria broken into nineteen different sections. The accreditation program will raise the bar for ACHD care in the United States, encouraging ACHD programs to strive to meet the criteria, which will provide more and much needed resources to the programs and will ultimately benefit the patient. Through the accreditation program we are also looking for additional data collection to show the benefit of accreditation criteria met in a program setting compared to an ACHD program that doesn't meet the necessary criteria. As of the end of 2018, we had 24 sites earning the ACHA ACHD accreditation status and a total of 42 sites who have gone through the process (accreditation fee, business associate agreement, site visit scheduled or completed).
Interesting data from their 2019 990 filing
According to the filing, the non-profit's mission is “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 medical community.”.
When referring to its actions, they were described as: “To improve and extend the lives of millions born with congenital heart defects”.
- According to the law, the state of operation reported by the non-profit is PA.
- As per the filing, the address of the non-profit for 2019 is 280 NORTH PROVIDENCE ROAD NO 6, MEDIA, PA, 19063.
- According to their form, the non-profit as of 2019 has a total of 0 employees.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is -$389,938.
- The organization has 19 independent voting members.
- The organization was formed in 1998.
- The organization pays $1,476,180 in salary, compensation, and benefits to its employees.
- The organization pays $560,350 in fundraising expenses.