Adult Congenital Heart Association Inc

TO IMPROVE AND EXTEND THE LIVES OF MILLIONS BORN WITH CONGENITAL HEART DEFECTS

ADVOCACY, OUTREACH AND RESEARCH ACTIVITIES:-CONGRESSIONAL CONGENITAL HEART CAUCUS (39 MEMBERS TO DATE); ACHA BEGAN WORKING WITH A NEW ADVOCACY FIRM AND HOSTED AN ACHD (ADULT CONGENITAL HEART DISEASE) BRIEFING IN NOVEMBER 2021 FOR ALL MEMBERS OF CONGRESS. ACHA INVITED ACHA MEDICAL ADVISORY BOARD (MAB) MEMBERS AND MEMBERS OF THE CDC TO SPEAK. -REGIONAL DEVELOPMENT LEADERS (COVERED ONE REGION IN 2021)-RESEARCH PROGRAM (IN 2021 THE ACHA FUNDED FOUR YOUNG INVESTIGATOR RESEARCH GRANTS) CONTINUED ON SCHEDULE O.CONGRESSIONAL CONGENITAL HEART CAUCUS: THE FORMATION OF THE CONGRESSIONAL CONGENITAL HEART CAUCUS IN 2012, INITIATED BY ACHA ADVOCACY EFFORTS, IS AN INFORMAL GROUP OF MEMBERS OF CONGRESS DEDICATED TO ISSUES RELATED TO CONGENITAL HEART DEFECTS. WE ARE CONTINUALLY WORKING TO INCREASE THE NUMBER OF MEMBERS WHO SERVE ON THIS CAUCUS. AT THE END OF 2021 THERE WERE 39 MEMBERS WHO WERE A PART OF THE CONGENITAL HEART CAUCUS.

EDUCATION AND AWARENESS ACTIVITIES:-ACCREDITATION PROGRAM: FIVE NEW APPLICATIONS ACCEPTED IN 2021 WITH A TOTAL OF 44 ACCREDITED SITES AS OF YEAR END-EDUCATIONAL MATERIALS: PRINTED AND ON COMPREHENSIVE WEBSITE: ACHAHEART.ORG ALONG WITH REGIONAL CONFERENCES-PROFESSIONAL PROGRAMS: ACHA OFFERED ONE TWO-YEAR FELLOWSHIP TO VANDERBILT UNIVERSITY IN 2021. AFTER THIS ACHA WILL NO LONGER OFFER FELLOWSHIP FUNDING. -PEER SUPPORT PROGRAM: ACHA MANAGES VOLUNTEERS TO PROVIDE ONE ON ONE SUPPORT TO ACHD PATIENTS SEEKING SUCH HELP.CONTINUED ON SCHEDULE O.ACCREDITATION PROGRAM: IN 2014 ACHA AND MEMBERS OF THE MEDICAL ADVISORY BOARD (MAB) 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 BENEFITS 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 2021, WE HAD 44 SITES EARNING THE ACHA ACHD ACCREDITATION STATUS AND A TOTAL OF 68 SITES WHO HAVE GONE THROUGH THE PROCESS (ACCREDITATION FEE, BUSINESS ASSOCIATE AGREEMENT, SITE VISIT SCHEDULED OR COMPLETED).EDUCATIONAL MATERIALS AND WEBINARS: THROUGH ITS WEBSITE, DISCUSSION FORUMS, 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.HEART TO HEART REGIONAL CONFERENCES: ACHA NATIONAL AND REGIONAL CONFERENCES: A NATIONAL CONFERENCE WAS PLANNED FOR 2019, WHICH WAS POSTPONED TO 2020, 2021 AND THEN TO 2022. HOWEVER, DUE TO COVID, THE IN-PERSON EVENT DID NOT OCCUR. THE VIRTUAL NATIONAL CONFERENCE OCCURRED IN 2022. EXPENSES WERE INCURRED IN ALL YEARS FOR WHICH THE CONFERENCE WAS PLANNED, INCLUDING 2021. REGIONAL CONFERENCES WERE PLANNED FOR 2021 BUT HAD TO BE POSTPONED DUE TO THE COVID-19 PANDEMIC. EACH REGIONAL CONFERENCE BEGINS WITH A DYNAMIC PARTNERSHIP WITH LOCAL 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. 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 9,120 MEMBERS AND 92,000 POSTS. ACHD PROGRAM DIRECTORY: IN COLLABORATION WITH THE INTERNATIONAL SOCIETY OF ADULT CONGENITAL HEART DISEASE, ACHA EXPANDED ITS ONLINE LISTING TO MORE THAN 122 ACHD CLINICS IN THE UNITED STATES AND CANADA; THE DIRECTORY CONTINUED TO BE THE ONLY RESOURCE OF ITS KIND AVAILABLE IN THE UNITED STATES.