Adult Congenital Heart Association Inc

TO EMPOWER THE CHD COMMUNITY BY ADVANCING ACCESS TO RESOURCES AND SPECIALIZED CARE.

ACCREDITATION, SUPPORT, EDUCATION AND AWARENESS ACTIVITIES:-MEDICAL CENTER ACCREDITATION PROGRAM: THE ACCREDITATION PROGRAM STARTED IN 2014. AS OF DECEMBER 2023, THERE ARE A TOTAL OF 50 ACCREDITED SITES IN THE US. THERE ARE SEVERAL ADDITIONAL SITES CURRENTLY IN VARIOUS STAGES OF THE ACCREDITATION PROCESS.-PEER SUPPORT PROGRAM: ACHA MANAGES VOLUNTEERS TO PROVIDE ONE ON ONE SUPPORT TO ACHD PATIENTS SEEKING SUCH HELP.(CONTINUED ON SCHEDULE O).- EDUCATIONAL MATERIALS AND WEBINARS: THROUGH ITS WEBSITE, WEBINARS, AND SOCIAL MEDIA CHANNELS, ACHA PROVIDES 24-HOUR ACCESS TO RELEVANT, UP-TO-DATE INFORMATION AND RESOURCES. FROM THE WEBINARS PATIENTS LEARN MORE ABOUT SPECIFIC CHD CONDITIONS AND DEFECTS, AND THE ISSUES THAT AFFECT THEIR LIVES. LEADING EXPERTS AND ADVOCATES COVER A RANGE OF INTERESTING, DIVERSE, AND TIMELY TOPICS IN PATIENT-FRIENDLY LANGUAGE.- ACHA REGIONAL CONFERENCES: A REGIONAL CONFERENCE WAS HELD IN PERSON (TENNESSEE) DURING 2023. THREE IN-PERSON REGIONAL CONFERENCES ARE CURRENTLY BEING PLANNED FOR 2024. EACH CONFERENCE BEGINS WITH A DYNAMIC PARTNERSHIP WITH PATIENTS, PROFESSIONALS, AND INSTITUTIONS. EACH EVENT IS TAILORED TO REGIONAL NEEDS AND CAN INCLUDE: AN EDUCATIONAL PRESENTATION (TOPICS INCLUDE ACHA 101, ACHD OVERVIEW, DEFECT SPECIFIC INFORMATION, ETC.), GROUP ROUNDTABLES, AND EDUCATION MATERIALS AND RESOURCES. ACHD CARE GUIDELINES ARE REVIEWED AT EVERY SESSION TO ENCOURAGE LIFELONG CARE. - ACHD CLINIC DIRECTORY: ACHA EXPANDED ITS ONLINE LISTING WITH CLOSE TO 400 ACHD CLINICS (INCLUDING SATELLITE CLINICS) IN THE UNITED STATES AND CANADA; THE DIRECTORY CONTINUES TO BE THE ONLY RESOURCE OF ITS KIND AVAILABLE IN THE UNITED STATES.- ACHD PATIENT DIRECTORY: THE ACHA ACHD PATIENT RESOURCE DIRECTORY WENT LIVE IN 2023 AND PROVIDES INFORMATION, RESOURCES, AND TOOLS FOR ACHD PATIENTS WHO MIGHT EXPERIENCE BARRIERS WHEN ACCESSING RECOMMENDED SPECIALIZED CARE. THESE SEARCHABLE RESOURCES ARE PROVIDED TO HELP PATIENTS TAKE AN ACTIVE ROLE IN THEIR CARDIAC CARE. PATIENTS CAN SEARCH FOR TOPICS IN AREAS SUCH AS ACHD/CHD ORGANIZATIONS, OTHER HEALTH ADVOCACY ORGANIZATIONS, ACCESS TO CARE, AND DIVERSITY, EQUITY AND INCLUSION.

ADVOCACY, OUTREACH AND RESEARCH ACTIVITIES:ADVOCACY- ACHA PLAYED A LEADING ROLE IN ADVOCATING FOR THE PASSAGE OF THE CONGENITAL HEART FUTURES ACT IN 2010 AS PART OF THE AFFORDABLE CARE ACT AND FOR THE CONGENITAL HEART FUTURES REAUTHORIZATION ACT (CHFRA) OF 2017. THIS LEGISLATION AUTHORIZES UP TO $10 MILLION ANNUALLY IN FEDERAL FUNDING TO STUDY AND COLLECT DATA ON CONGENITAL HEART DISEASE THROUGH THE U.S. CENTERS FOR DISEASE CONTROL AND PREVENTION, AND IT DIRECTS THE NATIONAL INSTITUTES OF HEALTH TO REPORT ON ONGOING RESEARCH EFFORTS IN CHD. ACHA ANNUALLY ADVOCATES FOR FUNDING CHFRA AT THE HIGHEST AUTHORIZED LEVEL, AND IN FY2023 CONGRESS INCREASED FUNDING FOR THE FIFTH STRAIGHT YEAR, TO $8.25 MILLION (CONTINUED ON SCHEDULE O).ADVOCACY (CONTINUED) - BECAUSE CURRENT AUTHORIZATION REQUIRING CONGRESS TO APPROPRIATE FUNDING FOR CHD RESEARCH AND SURVEILLANCE EXPIRED AT THE END OF 2023, ACHA WILL MOBILIZE THIS YEAR FOR REAUTHORIZATION TO ENSURE CONTINUED SUPPORT FOR PEOPLE WITH CHD. THE CONGENITAL HEART FUTURES REAUTHORIZATION ACT OF 2024 REAFFIRMS OUR COUNTRY'S COMMITMENT TO VITAL RESEARCH, SURVEILLANCE, AND AWARENESS PROGRAMS AT THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) BY REAUTHORIZING FUNDING AT $10 MILLION ANNUALLY THROUGH FY 2029. ACHA WILL SUPPORT CAPITOL HILL VISITS AND IN-DISTRICT VISITS IN 2024 AS WE CONTINUE TO PUSH FOR LEGISLATION AND POLICIES THAT IMPROVE HEALTH AND PSYCHOSOCIAL OUTCOMES FOR CHD PATIENTS. THIS INCLUDES ADDRESSING THE ACHD WORKFORCE SHORTAGE BY IDENTIFYING BARRIERS TO TRAINING NEW FELLOWS TO FOLLOW AN ACHD CAREER PATH. OUTREACH - REGIONAL DEVELOPMENT LEADERS - COVERED TWO REGIONS DURING 2023 TO INCREASE CHD AWARENESS AND DEVELOP CHAMPIONS ACROSS REGIONS.RESEARCH - IN 2023, ACHA FUNDED 3 RESEARCH GRANTS, BRINGING THE TOTAL NUMBER OF GRANTS ISSUED TO 17 AND CLOSE TO $500,000 SINCE 2019.