ADULT CONGENITAL HEART ASSOCIATION
280 NORTH PROVIDENCE ROAD NO 6, MEDIA, PA 19063 www.achaheart.org

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Organizations Filed Purposes: ACHA'S MISSION IS TO IMPROVE AND EXTEND THE LIVES OF THE MILLIONS BORN WITH HEART DEFECTS THROUGH EDUCATION, ADVOCACY, AND THE PROMOTION OF RESEARCH. ACHA SERVES AND SUPPORTS NEARLY TWO MILLION ADULTS WITH CONGENITAL HEART DEFECTS, THEIR FAMILIES AND MEDICAL COMMUNITY.

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)-IN-DISTRICT ADVOCACY INITIATIVE: INCLUDED 100 CONSTITUENTS IN 25 STATES IN 2019-REGIONAL DEVELOPMENT LEADERS (COVERED THREE REGIONS IN 2019)-RESEARCH PROGRAM (IN 2019 ACHA FUNDED THREE, 1-YEAR FELLOW GRANTS AND YEAR ONE OF THREE, 2-YEAR FACULTY 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 2019 THERE WERE 39 MEMBERS WHO WERE A PART OF THE CONGENITAL HEART CAUCUS.IN-DISTRICT ADVOCACY INITIATIVE: THIS NEW INITIATIVE OCCURRED FROM AUGUST 12-28, 2019. ACHA CONSTITUENTS WERE INSTRUCTED TO SCHEDULE MEETINGS WITH THEIR FEDERAL LEGISLATORS WHILE THEY WERE IN THEIR HOME OFFICES DURING THE AUGUST TIMEFRAME. WE WORKED WITH ABOUT 100 CONSTITUENTS FROM 25 DIFFERENT STATES TO OUTREACH TO THEIR LEGISLATORS TO DISCUSS ACCESS TO CARE, ABOUT ACHA AND LEGISLATIVE NEXT STEPS FOR THE ACHD PATIENTS.NATIONAL CONGENITAL HEART ADVOCACY DAY: MORE THAN 193 ADVOCATES FROM 30 STATES GATHERED IN WASHINGTON, D.C., ON MARCH 4-5, 2019 TO TALK TO THEIR LAWMAKERS CONGENITAL HEART DISEASE (CHD). HOSTED BY THE ADULT CONGENITAL HEART ASSOCIATION, CHILDREN'S HEART FOUNDATION AND THE PEDIATRIC CONGENITAL HEART ASSOCIATION, THIS ANNUAL EVENT BROUGHT TOGETHER PATIENTS, FAMILY MEMBERS, MEDICAL PROFESSIONALS, AND SUPPORTERS FROM ACROSS THE COUNTRY TO CONNECT WITH MORE THAN 143 LEGISLATIVE OFFICES.

EDUCATION AND AWARENESS ACTIVITIES:-ACCREDITATION PROGRAM: NINE NEW APPLICATIONS ACCEPTED IN 2019 WITH A TOTAL OF 47 ACCREDITED SITES AS OF YEAR END-EDUCATIONAL MATERIALS: PRINTED AND ON COMPREHENSIVE WEBSITE: ACHAHEART.ORG ALONG WITH REGIONAL CONFERENCES-PROFESSIONAL PROGRAMS: FELLOWSHIPS AWARDED ANNUALLY.-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 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 2019, WE HAD 35 SITES EARNING THE ACHA ACHD ACCREDITATION STATUS AND A TOTAL OF 60 SITES WHO HAVE GONE THROUGH THE PROCESS (ACCREDITATION FEE, BUSINESS ASSOCIATE AGREEMENT, SITE VISIT SCHEDULED OR COMPLETED).EDUCATIONAL MATERIALS AND WEBINARS: THROUGH IT'S 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 'WHERE YOU ARE' REGIONAL CONFERENCES: FIVE REGIONAL CONFERENCES WERE HELD IN 2019: ATLANTA, GA; AURORA, CO; HOUSTON, TX; NEW YORK, NY; AND WAUWATOSA, WI. 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 510 PATIENTS AND FAMILY MEMBERS WERE SERVED.ACHA DISCUSSION FORUM: A BENEFIT OF ACHA MEMBERSHIP IS THE ABILITY TO PARTICIPATE IN THE ONLINE DISCUSSION FORUM. MORE THAN 9,062 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.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 2019. THE AWARD WAS GIVEN TO VANDERBILT UNIVERSITY FOR ONE YEAR EACH OF A TWO YEAR FELLOWSHIP.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.

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