Adult Congenital Heart Association

ACHA’s President and CEO Mark Roeder was at the White House today when the president signed the Congenital Heart Futures Reauthorization Act of 2024 into law. Photos to come! On behalf of the 1 in 100 adults living with a congenital heart condition, ACHA thanks our champions—Senators Dick Durbin and Todd Young and Reps. Gus Bilirakis and Adam Schiff—and every advocate who rallied behind funding CHD research, data collection, and awareness at up to $50 million over 5 years. You did it!? ? Thanks to ACHA’s persistence and partnership with our colleagues at the Children’s Heart Foundation, Conquering CHD, and Mended Little Hearts, CHFRA will, for the first time, directly address the shortage of certified adult CHD care providers. This new law requires Congress to receive a report on the education and training of the existing ACHD workforce, as well as recommendations to grow and improve it.?? ? “Passage of the Congenital Heart Futures Reauthorization Act of 2024 marks a significant step toward achieving ACHA’s vision of a world where every adult with CHD receives specialized cardiac care,” Mark Roeder said. “By working together, we amplify the voices of the millions of children, families, and adults coping with this lifelong condition.”?? ? Even as we celebrate this win, ACHA looks toward future advocacy on behalf of adults with CHD. Stay informed about our 2025 priorities: https://lnkd.in/d4ABEM9T

Over the weekend, Dr. Anitha John presented at the American Heart Association Scientific Sessions about how the CHI registry engages patients and partners to propel our work forward. It was and is an honor whenever our team has the chance to highlight the work our vibrant, dedicated community does to create a brighter future for people living with #CHD. Adult Congenital Heart Association

Are you an #ACHD patient tired of being lost in the complexities of the healthcare system? Join the #NIH funded #EmpowerMyCh study today and gain confidence in your knowledge, skills, and ability to manage your CHD. Together, we can navigate the complexities of the healthcare system and elevate your care. ACHA is proud to be a part of this initiative. With just a few easy surveys on your mobile device or computer, you can: ? Create your personal medical passport ? Access tailored health information ? Connect with the congenital heart community ? Explore stories and advice from other patients ? And much more! Discover more about #EmpowerMyCH, connect with your #CHD community, and take charge of your health journey. Visit https://empowerMyCh.org to join us or learn more. #CHDAwareness

Clinical trials are an important step in the development of treatment options. Learn more about #FUEL-2, the world’s largest #Fontan clinical trial at FUEL2study.com.

Watch last night's webinar about aging with congenital heart disease below or anytime on our website. As our 2024 webinars have come to a close, we want to thank all of our presenters for sharing their expertise, and all supporters who have attended and viewed our webinars. We look forward to sharing a new schedule in 2025!

ACHA is proud to be a part of the Congenital Heart Initiative. Learn more about the registry in the article below, which includes thoughts from ACHA Medical Advisory Board Member Anitha John, MD, PhD, and ACHA Patient & Family Advisory Board Co-Chair Jennifer Cortes.

3 of the 6 top-ranked research ideas from our Research Rumble were about mental health, showing it’s a high priority for members of the CHI. Future research centering on mental health is in the works!

Do you want to learn more about the unique cardiac and non-cardiac challenges encountered by older adults with CHD? If so, we hope you will attend our final webinar of this year this Wednesday. Learn more and register at https://bit.ly/48fUfGo.

Thank you to our attendees, speakers, volunteers and sponsors who joined ACHA at the Heart to Heart Regional Conference today in Kansas City! We had a terrific day presenting the latest educational information about CHD and building connections with one another and the CHD community. It was great to have some of our Peer Mentors with us.

Thank you to Johnson & Johnson, one of ACHA’s corporate supporters who make our Heart to Heart Regional Conferences possible. In this photo, local representative Robert DeSantis (at right) is pictured at our Baltimore/DC conference with ACHA’s President and CEO Mark Roeder and Senior Education Manager Paula Miller. We are appreciative of Robert and Johnson & Johnson for supporting our educational efforts and for spreading awareness of lifelong care for people with CHD alongside ACHA!