2024-11-11T22:10:22-05:00 2023-12-31 Allan Smith and Company CPAs PC Two Cabot Place Suite 8 Stoughton MA 02072 990 2023-01-01 251852548 HEREDITARY ANGIOEDEMA ASSOCIATION INC HERE 10560 MAIN STREET STE PS40 FAIRFAX VA 22030 ANTHONY CASTALDO CHAIRCHIEF EXE 8665808178 2024-11-10 true true Allan Smith CPA P00825089 7742065553 2024-11-11 2023 2024-10-15 13:58:12Z ANTHONY CASTALDO 10200149 false X HAEA.ORG X 2005 VA SEE SCHEDULE O COMMENT. 5 3 22 1000 0 0 7891572 9943283 0 3029 200223 4182 56643 7898783 10200149 965880 991981 0 2342163 2732116 0 44314 1520559 3508759 4828602 7232856 3070181 2967293 11968085 16392496 161707 598961 11806378 15793535 SEE SCHEDULE O COMMENT. false false 6757744 9943283 THE HAE ASSOCIATIONS OVERALL OBJECTIVE IS TO SAVE LIVES AND RAISE THE QUALITY OF LIFE FOR PATIENTS WITH THE RARE, DEBILITATING, AND POTENTIALLY FATAL RARE DISEASE HEREDITARY ANGEODEMA. WE PROVIDE PATIENTS AND PHYSICIANS WITH ESSENTIAL, AUTHORITATIVE INFORMATION AIMED AT INCREASING DIAGNOSIS RATES AND HELPING PATIENTS FIND AN APPROPRIATE TREATMENT. WE OFFER AN ARRAY OF PROGRAMS, SERVICES, AND ACTIVITIES THAT INCLUDE CONTINUING MEDICAL EDUCATION, IN PERSON AND WEB BASED SEMINARS, PATIENT AND SCIENTIFIC CONFERENCES, SUPPORT GROUPS, AND INDIVIDUAL COUNSELING. THE HAEA WEBSITE AND EXTENSIVE SOCIAL MEDIA PRESENSE ENHANCES OUR ABILITY TO REACH AND DISSEMINATE INFORMATION TO THE PATIENT AND PHYSICIAN COMMUNITIES. WE ARE STAUNCH ADVOCATES FOR (1) PATIENT ACCESS TO AND SUFFICIENT INSURANCE REIMBURSEMENT FOR CURRENTLY AVAILABLE THERAPIES, AND (2) RESEARCH DIRECTED TOWARDS HELPING PATIENTS IMPROVE THEIR QUALITY OF LIFE AND, ULTIMATELY, FINDING A CURE. THE HAEA ALSO CONDUCTS NATIONAL PATIENT AND PHYSICIAN MEETINGS, AND OFFERS A VARIETY OF SERVICES TO INDIVIDUALS AND FAMILIES THAT INCLUDE PHYSICIAN AND CLINICAL TRIAL REFERRALS AND ASSISTANCE IN DEALING WITH DISEASE-RELATED EMERGENCIES. 6757744 true true false false false false false false false true false false false false true false true false false false false false false false false false false true false true false false false false false false false false false false false false false false false false false false true 12 0 true 22 true false false false false false false false false false false false false false false X 5 3 true false false false false false false true true false false true true true true true true true true false X X LEIGH FARRAR 8665808178 10560 MAIN STREET FAIRFAX VA 22030 ANTHONY CASTALDO CHAIRCHIEF EXECUTIVE OFFICER 40.00 0.00 X X X 244846 0 0 MICHELLE CUEVAS FORMER SENIOR EXECUTIVE VPCO 40.00 0.00 X 241122 0 0 LEIGH FARRAR EXECUTIVE VPCHIEF FINANCIAL 40.00 0.00 X 181676 0 0 CHRISTINE SELVA SENIOR DIRECTOR HEALTH & RESE 40.00 0.00 X 170873 0 0 LOIS PERRY DIRECTOR 40.00 0.00 X 151378 0 0 LARRY SALUS TREASURERCHIEF COMPLIANCE OF 20.00 0.00 X X 71495 0 0 DR ERIC PHILLIPS DIRECTOR 2.00 0.00 X 0 0 0 HENRIK BALLE BOYSEN PRESIDENT 20.00 0.00 X 0 0 0 KAREN BAIRD DIRECTOR 2.00 0.00 X 0 0 0 1061390 0 0 9 true true false 9943283 9943283 200223 200223 OTHER INCOME 541900 56643 56643 56643 10200149 56643 0 200223 X 991981 991981 890517 727272 135387 27858 1527350 1507713 10918 8719 106812 101554 3720 1538 40663 38030 2198 435 166774 154160 10091 2523 2647 2647 51225 30753 20472 442300 283157 159143 158360 158360 130608 60963 68339 1306 24659 23179 1233 247 103887 103480 407 19587 14739 4407 441 STAFF DEVELOPMENT AND TRAINI 56866 53454 2843 569 ADVOCACY EVENTS 2324420 2324415 5 SMALL OFFICE EQUIPMENT 16108 12565 3181 362 PATIENT SURVEY AND SUPPORTS 142264 142264 35828 29705 5807 316 7232856 6757744 430798 44314 5585993 8161815 12789 6382092 8217892 11968085 16392496 161707 104438 210000 284523 161707 598961 X 11087539 15476372 718839 317163 11806378 15793535 11968085 16392496 2967293 1019864 0 X false true X true false X 6965801 6124808 7197362 7891572 9943283 38122826 6965801 6124808 7197362 7891572 9943283 38122826 29762351 8360475 44572 25582 4536 3029 200223 277942 38400768 0.21770 0.17950 X 10 Facts and Circumstances Test Part II line 17a or 17b IN ACCORDANCE WITH THE BOARD OF DIRECTORS ENDORSED MANDATE (AND ASSOCIATED OPERATIONAL PROCEDURES), THE HAEA CONTINUOUSLY SOLICITS BROAD PUBLIC SUPPORT FOR ITS LIFE-SAVING AND LIFE-GIVING MISSION. NOTWITHSTANDING THE FACT THAT HAE IS AN ULTRA-ORPHAN RARE DISEASE, THE HAEA RECEIVES A SURPRISINGLY LARGE PERCENTAGE OF ITS FUNDING FROM PUBLIC SOURCES. GIVEN THE FACT THAT HAE IS AN ULTRA-ORPHAN RARE DISEASE WITH AN EXTREMELY SMALL NUMBER OF PATIENTS RESIDING IN THE UNITED STATES, THE TARGET POPULATION FOR SOLICITING FINANCIAL SUPPORT IS EXCEPTIONALLY LIMITED. DESPITE THESE INHERENT LIMITATIONS, THE HAEA HAS BECOME A HIGHLY EFFECTIVE RARE DISEASE PATIENT ADVOCACY ORGANIZATION THAT IS DIRECTLY RESPONSIBLE FOR SAVING COUNTLESS LIVES AND DRAMATICALLY IMPROVING PATIENT QUALITY OF LIFE, YEAR IN AND YEAR OUT. THE HAEAS SUCCESS IS DUE IN LARGE PART TO (1) THE BOARD OF DIRECTORS AND SENIOR MANAGEMENTS COMMITMENT TO MAXIMIZING PUBLIC FUNDRAISING, AND (2) A LASER-LIKE FOCUS ON DESIGNING AND IMPLEMENTING PROGRAMS AND ACTIVITIES THAT ARE OF MAXIMUM BENEFITS TO THE HAE PATIENT POPULATION.IT IS IMPORTANT TO NOTE THAT HAEAS BOARD OF DIRECTORS AND LEADERSHIP TEAM IS CONSTANTLY SEARCHING FOR INNOVATIVE APPROACHES TO INCREASING GENERAL SUPPORT. INDEED, WHEN IT COMES TO FUNDRAISING, WE DEVOTE AN EXTRAORDINARY AMOUNT OF TIME, ATTENTION AND RESOURCES TO EDUCATING, ENGAGING, AND EMPOWERING PATIENTS, THEIR RELATIVES, AND EMPLOYERS, AND ANY INTERESTED INDIVIDUAL OR ENTITY. PUBLIC FUNDRAISING EFFORTS WE SPONSOR INCLUDE OUR PATIENT MEET AND GREET, HAE DAY EVENTS IN CITIES THROUGHOUT THE USA, AND SOCIAL MEDIA FUNDRAISING CAMPAIGNS TARGETING DONATIONS FOR OUR HAEA SCHOLARSHIP PROGRAM AND PATIENT BENEVOLENCE FUND. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 8740446 1158816 9899262 8737417 3029 8740446 1.00000 false false false PLEDGE TO UNIV CALI SAN DIEGO FOU 284523 284523 11220013 1019864 1019864 10200149 10200149 7232856 7232856 7232856 true UC SAN DIEGO FOUNDATION 9500 GILMAN DRIVE SUITE 094 La Jolla CA 92093 952872494 501C3 284523 BOOK RESEARCH & MEDICINE Monitoring procedures (Part I, line 2) THE ORGANIZATION IS COMMITTED TO ADVANCING AND FACILITATING CLINICAL RESEARCH DESIGNED TO IMPROVE THE LIVES OF HEREDITARY ANGIOEDEMA PATIENTS. IN SUPPORT OF ITS COMMITMENT TO CLINICAL RESEARCH, BEGINNING IN 2012 AND THROUGH THE DATE OF THE TAX FILING, THE ORGANIZATION HAS COMMITTED OR PAID MORE THAN EIGHT MILLION DOLLARS ($8,000,000) TO THE UNIVERSITY OF CALIFORNIA AT SAN DIEGO, ESTABLISHING THE U.S. HAEA ANGIOEDEMA CENTER TO EXPAND AND ENHANCE RESEARCH INITIATIVES FOCUSED ON THIS GENETIC CONDITION. X X X true false false false false false false false false ANTHONY CASTALDO CHAIRCHIEF EXECUTIVE OFFICER 244846 244846 LOIS PERRY DIRECTOR 151378 151378 MICHELLE CUEVAS FORMER SENIOR EXECUTIVE VPCOO 241122 241122 LEIGH FARRAR EXECUTIVE VPCHIEF FINANCIAL OFFICE 181676 181676 CHRISTINE SELVA SENIOR DIRECTOR HEALTH & RESEARCH 170873 170873 Officer directors etc family relationship Part VI line 2 THE CHAIR OF THE BOARD OF DIRECTORS AND CHIEF EXECUTIVE OFFICER IS RELATED TO THE EXECUTIVE VICE PRESIDENT/CFO. THE BOARD OF DIRECTORS REVIEWED AND APPROVED THIS PROMOTION IN ADVANCE AND EVALUATES THIS RELATIONSHIP ON AN ANNUAL BASIS TO AFFIRM ITS CONTINUED APPROPRIATENESS. Form 990 governing body review Part VI line 11 THE CHAIR AND CHIEF EXECUTIVE OFFICER AND EXECUTIVE VICE PRESIDENT/CFO ARE ASSIGNED RESPONSIBILITY FOR REVIEW AND APPROVAL OF THE FEDERAL FORM 990. THE BOARD OF DIRECTORS AFFIRMS THE FILING PROVIDED. Conflict of interest policy compliance Part VI line 12c THE BOARD OF DIRECTORS PROVIDE SELF-DECLARATIONS OF POSSIBLE CONFLICTS OF INTEREST AS PART OF THE ANNUAL MEETING RESPONSIBILITIES. KEY EMPLOYEES ALSO PROVIDE AN ANNUAL SELF-DECLARATION. POTENTIAL CONFLICTS IDENTIFIED ARE REVIEWED AND APPROVED IF APPROPRIATE AS PART OF THE BOARD OF DIRECTORS ROUTINE RESPONSIBILITIES. CEO executive director top management comp Part VI line 15a THE BOARD OF DIRECTORS PERFORMS AN INFORMAL REVIEW OF THE CHAIR AND CHIEF EXECUTIVE OFFICERS SALARY FOR COMPARABLE RESPONSIBILITIES OF LIKE-SIZE AND TYPE ORGANIZATIONS WITH RECOGNITION OF THE NATIONAL AND INTERNATIONAL INFLUENCE OF THE SERVICES PROVIDED. DISCUSSIONS AND CONCLUSIONS ARE DOCUMENTED AS PART OF THE RECORDING OF THE MINUTES OF THE BOARD OF DIRECTORS INCLUDING THE FORMAL APPROVAL OF THE ADJUSTED COMPENSATION AND BENEFIT. Other officer or key employee compensation Part VI line 15b THE CHAIR AND CHIEF EXECUTIVE OFFICER, WITH SUPPORT OF THE BOARD OF DIRECTORS, PERFORMS A FORMAL REVIEW OF KEY MANAGER SALARIES, AS SUPPORTED BY AN OUTSIDE COMPENSATION CONSULTANT, FOR COMPARABLE RESPONSIBILITIES OF LIKE-SIZED AND TYPE ORGANIZATIONS WITH RECOGNITION OF THE NATIONAL AND INTERNATIONAL INFLUENCE OF THE SERVICES PROVIDED. DISCUSSIONS AND CONCLUSIONS ARE DOCUMENTED AS PART OF THE RECORDING OF THE MINUTES OF THE BOARD OF DIRECTORS INCLUDING THEIR FORMAL APPROVAL OF THE ADJUSTED COMPENSATION AND BENEFIT. Governing documents etc available to public Part VI line 19 THE ORGANIZATION MAKES ALL FEDERAL INFORMATION FILINGS AVAILABLE UPON REQUEST. VARIOUS COMPANIES MAKE THE FEDERAL FILINGS AVAILABLE VIA THE INTERNET. List of other expenses Part IX line 24e THE ORGANIZATION HOLDS A BI-ANNUAL PATIENT SUMMIT INTENDED TO BRING TOGETHER INDIVIDUALS WITH HEREDITARY ANGIOEDEMA, EXPERTS IN THE CLINICAL, RESEARCH AND ACADEMIA FIELDS, HEREDITARY ANGIODEMA ASSOCIATION STAFF AS WELL AS THOSE PHARMACEUTICAL COMPANIES THAT OFFER SUCCESSFUL THERAPIES (AND HOPEFUL FUTURE THERAPIES) INTENDED TO MINIMIZE THE IMPACT OF SYMPTOMS OF HEREDITARY ANGIOEDEMA. General explanation attachment PART III: BRIEFLY DESCRIBE THE ORGANIZATIONS MISSION:THE HEREDITARY ANGEOEDEMA ASSOCIATIONS (HAEA) OVERALL GOAL IS TO BE THE FORCE BEHIND (1) THWARTING THE POTENTIALLY FATAL AND DEBILITATING NATURE OF HAE, AND (2) ENABLING OUR PATIENT COMMUNITY TO ACHIEVE LIFE LONG HEALTH. WE ARE A NATIONAL PATIENT ADVOCACY ASSOCIATION THAT FOCUSES ON: INCREASING HAE AWARENESS AND EDUCATION; DRIVING PROGRESS IN CLINICAL CARE; HELPING PATIENTS GAIN ACCESS TO AND REIMBURSEMENT FOR OPTIMAL TREATMENT; MAINTAINING A STRONG PRESENCE IN THE HEALTH LEGISLATIVE AND REGULATORY ENVIRONMENTS; AND FOSTERING MOLECULAR LEVEL AND TRANSLATIONAL RESEARCH THAT FEATURES SEARCHING FOR A CURE.