Organizations Filed Purposes:
ACCELERATING THE DEVELOPMENT OF ADVANCED DIAGNOSTIC TOOLS AND EFFECTIVE TREATMENTS FOR SYSTEMIC AMYLOIDOSIS THROUGH COLLABORATION AND INNOVATION.
RESEARCH PROGRAMSARC'S RESEARCH PROGRAM FOCUSED ON BUILDING THE INFRASTRUCTURE WITHIN THE COLLABORATIVE NETWORK TO BE ABLE TO EXECUTE A PRIORITIZED PORTFOLIO OF STUDIES. A CORE COMPONENT OF ARC'S WORK IS BIOMARKERS. BIOMARKERS ARE INDICATORS OF DISEASE STATE OR STAGE THAT CAN HELP EARLY STAGE RESEARCHERS BETTER CHARACTERIZE DISEASE, HELP IDENTIFY PROMISING NEW DRUG CANDIDATES AND ACCELERATE THEIR TESTING IN PATIENTS THROUGH GIVING AN EARLY READOUT ON EFFICACY.
AWARENESS, EDUCATIONAL PROGRAMS AND ADVOCACYEDUCATION: THE ARC'S EDUCATIONAL PROGRAMS ON AMYLOIDOSIS REACHED THOUSANDS OF PHYSICIANS IN 2019 AND 2018. SCIENTIFIC MEETINGS WERE HELD AT THE ACC AND ASH, AS WELL AS HOSTING A BOOTH AND PRESENTATION AT AAHFN TO IDENTIFY AND ADDRESS CHALLENGES IN DIAGNOSING AND TREATING AMYLOIDOSIS. ARC SPONSORED THE FIRST SATELLITE SYMPOSIUM AT THE HEART FAILURE SOCIETY OF AMERICA CONFERENCE, DEVOTED ENTIRELY TO THE DIAGNOSIS AND TREATMENT OF CARDIAC AMYLOIDOSIS. THE AMYLOIDOSIS APP IS AN INNOVATIVE TOOL FOR PHYSICIANS THAT WAS LAUNCHED AND DISTRIBUTED WORLDWIDE DURING THE YEARS PRESENTED TO FACILITATE DIAGNOSIS.ADVOCACY:IN 2019 AND 2018, THE ARC ACTIVELY PARTICIPATED IN CONGRESSIONAL MEETINGS AND RARE DISEASE CAUCUS BRIEFINGS. ARC'S PATIENT PANELS ALSO ENSURE THAT THE PATIENT PERSPECTIVE IS INCLUDED THROUGHOUT THE DRUG DEVELOPMENT CONTINUUM.
HEALTHCARE PROFESSIONAL EDUCATION:THE RAPID CHANGE OF PACE IN RESEARCH AND TREATMENTS FOR AMYLOIDOSIS MAKES IT VITAL THAT HEALTHCARE PROFESSIONALS HAVE ACCESS TO UP-TO-DATE INFORMATION ON BEST PRACTICES. AMYLOIDOSIS RESEARCH CONSORTIUM, INC. PROVIDES UNIQUE RESOURCES AND TAILORED INFORMATION FOR DOCTORS, NURSESAND OTHER CLINICIANS. THEY COLLABORATE WITH AMYLOIDOSIS EXPERTS FROM AROUND THE WORLD TO DESIGN EDUCATIONAL TOOLS THAT PROVIDE CLINICIANS WITH EASY ACCESS TO THE MOST CURRENT INFORMATION ON SCIENTIFIC AND CLINICAL ADVANCES TO HELP ACHIEVE EARLIER DIAGNOSIS AND THERAPEUTIC INTERVENTION.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Isabelle Lousada | PRESIDENT & CEO | 40 | $130,625 |
| Kristen Hsu | EXEC. DIR. OF CLINICAL RESEARCH | 40 | $114,375 |
| Robyn Himick | ASSOC. DIR. OF CLINICAL RESEARCH | 40 | $103,125 |
| Liv Woods | SECRETARY/DIR OF OPERATIONS | 40 | $60,960 |
| Jason Shore | TREASURER | 0.5 | $0 |
| Sarah Cairns-Smith | BOARD CHAIR | 0.5 | $0 |
| Dena Heath | BOARD MEMBER | 30 | $0 |
| Dr Raymond Comenzo | BOARD MEMBER | 0.25 | $0 |
| Dr Giampaolo Merlini | BOARD MEMBER | 0.25 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202021929349301687_public.xml