2022-11-15T13:59:54-06:00 2021-12-31 203985546 JOHNSON OCONNOR FERON & CARUCCI LLP 101 EDGEWATER DRIVE SUITE 210 WAKEFIELD MA 01880 990 2021-01-01 472589708 AMYLOIDOSIS RESEARCH CONSORTIUM INC AMYL 6178998810 320 NEVADA STREET SUITE 210 NEWTON MA 02460 ISABELLE LOUSADA CEO & CLERK 6178998810 2022-11-15 1 ISABELLE LOUSADA XXX-XX-XXXX GREG ROGERS P01278154 7819143400 2022-11-15 0 AAL1 IAL1 2021 2022-09-23 18:48:47Z ISABELLE LOUSADA 320 NEVADA STREET SUITE 210 NEWTON MA 02460 1647972 0 X WWW.ARCI.ORG X 2015 MA ACCELERATING THE DEVELOPMENT OF ADVANCED DIAGNOSTIC TOOLS AND EFFECTIVE TREATMENTS FOR SYSTEMIC AMYLOIDOSIS THROUGH COLLABORATION AND INNOVATION. 6 4 10 2 0 0 1909160 1472339 7472 2258 827 724 208000 172651 2125459 1647972 0 75640 0 0 629450 888048 0 0 160865 604498 718443 1233948 1682131 891511 -34159 2277557 2350923 291242 154981 1986315 2195942 X ACCELERATING THE DEVELOPMENT OF ADVANCED DIAGNOSTIC TOOLS AND EFFECTIVE TREATMENTS FOR SYSTEMIC AMYLOIDOSIS THROUGH COLLABORATION AND INNOVATION. 0 0 808820 75640 167222 RESEARCH PROGRAMSARC HAS BEEN WORKING ON A NUMBER OF RESEARCH INITIATIVES INCLUDING DATASHARING, AND PATIENT EXPERIENCE STUDIES. ARC HAS ALSO DEVELOPED AN APPOINTMENT COMPANION TOOL THAT SUPPORTS PATIENTS THROUGHOUT THEIR TREATMENT JOURNEY. THE ANONYMIZED AGGREGATED DATA PROVIDES VALUABLE REAL WORLD INCITES. ARC IS DEVELOPING A PATIENT REPORTED OUTCOMES TOOL FOR USE IN CLINICAL TRIALS AND CLINICAL PRACTICE. 390239 AWARENESS, EDUCATIONAL PROGRAMS AND ADVOCACYARC'S PATIENT AND HEALTHCARE PROFESSIONAL PROGRAMS EDUCATE PHYSICIANS AND TAILOR INFORMATION TO SUIT THE PATIENT'S NEEDS AND ARE SUCCESSFULLY MATCHING THEM TO BETTER TREATMENT CENTERS, CARE, AND CLINICAL TRIALS. ARC'S PATIENT ADVISORY BOARD ARE INSTRUMENTAL IN DEFINING AND PRIORITIZING ARC'S PATIENT PROGRAMS. ARC'S PATIENT SUPPORT SPECIALIST PROVIDES INFORMATION AND GUIDANCE FOR PATIENTS THROUGHOUT THEIR JOURNEY. ARC ALSO MAINTAINS A COMPREHENSIVE WEBSITE WITH THE LATEST INFORMATION AND NEWS ABOUT AMYLOIDOSIS. ARC'S UNIQUE AMYLOIDOSIS PATHFINDER TOOL SUPPORTS PATIENTS IN FINDING AND EVALUATING TREATMENT CENTERS AND MATCHING THEM WITH CLINICAL TRIALS. THIS TOOL HAS BEEN FURTHER ENHANCED TO SUPPORT PATIENTS WITH TELEHEALTH VISITS AND VIRTUAL CARE DURING THE PANDEMIC. ARC ALSO HOSTS ARC TALKS, A REGULAR PATIENT EDUCATIONAL WEBINAR SERIES COVERING A RANGE OF IMPORTANT TOPICS. ARC HAS DEVELOPED BOOKLETS, AND HANDOUTS TO PROVIDE PATIENTS WITH IN DEPTH INFORMATION ON AMYLOIDOSIS RELATED TOPICS 230596 HEALTHCARE PROFESSIONAL EDUCATION:ARC HAS CARRIED OUT RESEARCH TO UNDERSTAND THE BARRIERS AND PATHWAYS TO EARLY DIAGNOSIS. FROM THIS RESEARCH, ARC DEVELOPED AND IMPLEMENT TARGETED SOLUTIONS. ARC RAISES AWARENESS AND PROVIDES PHYSICIAN EDUCATION ON THE SIGNS, SYMPTOMS, AND CARE OF AMYLOIDOSIS TO RAISE THE LEVEL OF SUSPICION, IMPROVE THE SPEED OF DIAGNOSIS, AND STANDARDS OF CARE. ARC HELD A MASTERCLASS FOR PHYSICIANS AND NURSES IN DALLAS, TX FOCUSED ON ADDRESSING THE CHALLENGES OF ACCURATE DIAGNOSIS AND MANAGING CARE. ARC HAS PUBLISHED PEER REVIEWED CONSENSUS GUIDELINES DEFINING PATHWAY FOR SUSPICION AND DIAGNOSIS WITH A FOCUS ON CARDIOLOGY AND GENERAL PRACTICE. ARC SPONSORED A SATELLITE SYMPOSIUM AT THE HFSA CONFERENCE ON THE DIAGNOSIS AND TREATMENT OF CARDIAC AMYLOIDOSIS. 1429655 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 1 11 0 1 10 1 0 0 0 0 0 0 0 0 0 0 0 0 X 6 4 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 MA NY PA CA X THE ORGANIZATION 6178898810 320 NEVADA STREET SUITE 210 NEWTON MA 02460 ISABELLE LOUSADA CEO & CLERK 40.00 X 142005 0 249 DR GIAMPAOLO MERLINI BOARD MEMBER 0.25 X 0 0 0 DR RAYMOND COMENZO BOARD MEMBER 0.25 X 0 0 0 DENA HEATH BOARD MEMBER 3.00 X 0 0 0 SARAH CAIRNS-SMITH PRESIDENT/BOARD CHAIR 0.50 X X 0 0 0 JASON SHORE TREASURER 0.50 X X 0 0 0 KRISTEN HSU EXEC. DIR. OF CLINICAL RESEARCH 40.00 X 120967 0 249 ROBYN HIMICK ASSOC. DIR. OF CLINICAL RESEARCH 40.00 X 110449 0 235 373421 0 733 3 0 0 0 QUALITY METRIC INCORPORATED LLC 1301 ATWOOD AVENUE SUITE 311N JOHNSTON RI 02919 PROGRAM CONSULTANT 187578 ANALYSIS GROUP 111 HUNTINGTON AVENUE 14TH FLOOR BOSTON MA 02199 PROGRAM CONSULTANT 160000 2 118220 1354119 1472339 HONORARIUM AND CONSULT 900099 2258 2258 2258 724 724 164964 164964 7687 0 7687 7687 7687 1647972 167222 0 8411 X 75640 75640 142428 94952 23738 23738 656716 552962 16306 87448 19345 7228 317 11800 69559 59034 10525 12860 12860 25650 25650 406185 405353 441 391 6610 6445 165 5103 2211 637 2255 73209 62115 1433 9661 46411 33974 6325 6112 1997 1882 115 76585 76585 24056 18042 1203 4811 4062 2329 1333 400 PROGRAM MATERIALS AND O 20152 20152 0 0 DUES, FEES AND LICENSES 13041 8859 938 3244 TELEPHONE 2522 1892 315 315 1682131 1429655 91611 160865 84392 474601 1789173 1823368 347602 7963 14541 4080 3450 2990 1150 460 7235 40699 17333 0 15883 2277557 2350923 91242 154981 200000 0 291242 154981 X 847579 1231465 1138736 964477 1986315 2195942 2277557 2350923 -34159 243786 0 X 0 1 X 0 0 X 1271230 1416444 1684866 2109160 1472339 7954039 1271230 1416444 1684866 2109160 1472339 7954039 4239302 3714737 313 597 44643 208827 173375 427755 8381794 33724 0.44320 0.43510 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 232999 207827 198395 639221 958832 58250 51957 49599 159806 239709 3450 2990 460 460 1667972 20000 20000 1647972 0 1647972 1702131 20000 20000 1682131 0 1682131 1 HEART FAILURE SOCIETY OF AMERICA INC 9211 CORPORATE BOULEVARD 270 ROCKVILLE MD 20850 061416238 501(C)(3) 75640 0 TO SUPPORT A SATELLITE SYMPOSIUM ON CARDIAC AMYLOIDOSIS 1 1 PART I, LINE 2: THE ORGANIZATION'S GRANTMAKING ACTIVITIES CONSIST OF AWARDING FUNDS ANNUALLY TO THE HEART FAILURE SOCIETY OF AMERICA (HFSA) TO SUPPORT HFSA'S MISSION. THE ORGANIZATION CO-HOSTED AN EDUCATIONAL SYMPOSIUM ON CARDIAC AMYLOIDOSIS AT THE 2021 HFSA ANNUAL SCIENTIFIC MEETING. BECAUSE OF THE JOINT COLLABORATION WITH THE GRANTEE THROUGH THIS INITIATIVE, THE ORGANIZATION WAS ABLE TO ENSURE ITS GRANT FUNDING WAS SPENT IN FURTHERANCE OF ITS MISSION. PATIENT DISCOVERY SOLUTIONS PATIENT DISCOVERY SOLUTIONS' CEO AND CO-FOUNDER SERVES AS ARC'S TREASURER 208750 PATIENT DISCOVERY SOLUTIONS PAYS ROYALTY INCOME FOR SALES OF A CLINICAL TRIAL FINDER TOOL ORIGINALLY DEVELOPED BY ARC. DURING THE YEAR ENDED DECEMBER 31, 2021, PATIENT DISCOVERY SOLUTIONS PAID ARC $208,750 (REVENUE RECOGNIZED WAS $164,964). 0 FORM 990, PART VI, SECTION B, LINE 11B A COPY OF THE ORGANIZATION'S 990 IS MADE AVAILABLE TO THE BOARD OF DIRECTORS FOR REVIEW BEFORE IT IS FINALIZED AND FILED WITH APPLICABLE STATE AND FEDERAL AUTHORITIES. FORM 990, PART VI, SECTION B, LINE 12C EMPLOYEES AND BOARD MEMBERS ARE REQUIRED TO DISCLOSE ANY CONFLICTS OF INTEREST ON AN ANNUAL BASIS. FORM 990, PART VI, SECTION B, LINE 15 AMYLOIDOSIS RESEARCH CONSORTIUM, INC'S EXECUTIVE COMPENSATION PROGRAM IS ADMINISTERED BY THE BOARD OF DIRECTORS. THE BOARD IS RESPONSIBLE FOR ESTABLISHING AND MAINTAINING A COMPETITIVE COMPENSATION PROGRAM FOR THE KEY EXECUTIVES AND KEY EMPLOYEES OF THE ORGANIZATION. THE BOARD MEETS AS NEEDED TO REVIEW THE COMPENSATION PROGRAM AND MAKE RECOMMENDATIONS, AS APPROPRIATE. A PERFORMANCE EVALUATION IS CONDUCTED AND REVIEWED ON AN ANNUAL BASIS AND IS INTENDED TO ENSURE THAT THE COMPENSATION PROGRAM FALLS WITHIN A REASONABLE RANGE OF COMPETITIVE PRACTICES FOR COMPARABLE POSITIONS AMONG SIMILARLY SITUATED ORGANIZATIONS. FOLLOWING THIS REVIEW, COMPENSATIONS ARE APPROVED FOR SELECTED KEY EXECUTIVES AND KEY EMPLOYEES, BASE SALARIES AND ANNUAL INCENTIVE OPPORTUNITY ADJUSTMENTS, AND OBJECTIVES AND GOALS FOR THE UPCOMING YEAR'S ANNUAL INCENTIVE PLAN. THERE IS NO OTHER COMMITTEE WITH AUTHORITY TO ACT ON BEHALF OF THE GOVERNING BODY FORM 990, PART VI, SECTION C, LINE 19 ORGANIZATION'S DOCUMENTS ARE AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G OTHER: PROGRAM SERVICE EXPENSES 405,353. MANAGEMENT AND GENERAL EXPENSES 441. FUNDRAISING EXPENSES 391. TOTAL EXPENSES 406,185.