2026-09-15T16:21:48-05:00 2025-10-31 HAN GROUP LLC 1020 19TH STREET NW SUITE 800 WASHINGTON DC 20036 990 2025-01-01 455312680 LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC LYSO 7032616220 3702 PENDER DRIVE 170 FAIRFAX VA 22030 UYENSA BEESE TREASURER/OPERATIONS DIRECTOR 7032616220 2026-09-15 1 JENNIFER S HAN P00633304 2022937000 2026-09-15 2025 DR OZLEM GOKER-ALPAN 3702 PENDER DRIVE 170 FAIRFAX VA 22030 4217542 0 X LYSOSOMALCENTER.ORG X 2012 MD TO IMPROVE THE DIAGNOSIS, TREATMENT, AND UNDERSTANDING OF LYSOSOMAL AND OTHER RARE GENETIC DISORDERS. 2 0 0 3 0 0 501823 745413 3921232 2848672 4 20727 0 0 4423059 3614812 0 0 0 0 1834816 1641081 0 0 3881 1906947 1496009 3741763 3137090 681296 477722 2422363 2510395 1525864 1553362 896499 957033 X THE MISSION OF THE LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER (LDRTC) IS TO IMPROVE THE DIAGNOSIS, TREATMENT, AND UNDERSTANDING OF LYSOSOMAL AND OTHER RARE GENETIC DISORDERS BY CONDUCTING SCIENTIFIC RESEARCH, ADVANCING TRANSLATIONAL MEDICINE, EDUCATING HEALTHCARE PROFESSIONALS AND PATIENTS, AND PROMOTING THE DEVELOPMENT OF INNOVATIVE THERAPIES. 0 1 2431567 2793672 INDUSTRY-SPONSORED CLINICAL RESEARCH: LDRTC CONDUCTS INDUSTRY-SPONSORED CLINICAL RESEARCH IN LYSOSOMAL AND OTHER RARE GENETIC DISORDERS, INCLUDING STUDIES OF INVESTIGATIONAL AND APPROVED THERAPIES. THROUGH THESE RESEARCH PROGRAMS, LDRTC PARTICIPATES IN THE SCIENTIFIC AND CLINICAL EVALUATION OF THERAPEUTIC APPROACHES, GENERATES AND CONTRIBUTES CLINICAL RESEARCH DATA, AND SUPPORTS THE DEVELOPMENT AND REGULATORY EVALUATION OF THERAPIES FOR RARE DISEASES. THESE ACTIVITIES ARE CONDUCTED PURSUANT TO CLINICAL RESEARCH AGREEMENTS WITH PHARMACEUTICAL AND BIOTECHNOLOGY SPONSORS AND IN ACCORDANCE WITH APPLICABLE RESEARCH PROTOCOLS AND REGULATORY REQUIREMENTS.INVESTIGATOR-INITIATED RESEARCH: LDRTC INDEPENDENTLY DEVELOPS AND CONDUCTS INVESTIGATOR-INITIATED RESEARCH TO ADVANCE THE UNDERSTANDING OF LYSOSOMAL AND OTHER RARE GENETIC DISORDERS. THESE ACTIVITIES INCLUDE STUDIES OF DISEASE MECHANISMS AND NATURAL HISTORY, BIOMARKER DISCOVERY AND VALIDATION, GENOTYPE-PHENOTYPE RELATIONSHIPS, DISEASE PROGRESSION, CLINICAL OUTCOME MEASURES, AND INNOVATIVE THERAPEUTIC APPROACHES. INVESTIGATOR-INITIATED RESEARCH IS SUPPORTED THROUGH RESEARCH GRANTS AND OTHER CHARITABLE FUNDING, AND FINDINGS ARE DISSEMINATED THROUGH PEER-REVIEWED PUBLICATIONS AND PRESENTATIONS AT NATIONAL AND INTERNATIONAL SCIENTIFIC MEETINGS. 458108 55000 SCIENTIFIC, PROFESSIONAL, AND PATIENT EDUCATION: LDRTC ADVANCES EDUCATION IN LYSOSOMAL AND OTHER RARE GENETIC DISORDERS THROUGH SCIENTIFIC SYMPOSIA, CONFERENCES, PROFESSIONAL AND CONTINUING MEDICAL EDUCATION, FELLOWSHIP AND HEALTHCARE PROFESSIONAL TRAINING, PATIENT AND CAREGIVER EDUCATION, WORKSHOPS, WEBINARS, AND OTHER COLLABORATIVE EDUCATIONAL INITIATIVES. THESE PROGRAMS ARE DESIGNED TO DISSEMINATE SCIENTIFIC KNOWLEDGE, IMPROVE DISEASE RECOGNITION AND DIAGNOSIS, ADVANCE CLINICAL MANAGEMENT, EDUCATE THE RARE-DISEASE WORKFORCE, AND PROVIDE PATIENTS AND FAMILIES WITH CURRENT INFORMATION ABOUT RARE DISORDERS AND EMERGING THERAPIES. 2889675 1 1 0 0 0 0 0 0 0 0 1 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 X 2 0 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 0 0 1 1 0 VA X UYENSA BEESE 7032616220 3702 PENDER DRIVE SUITE 170 FAIRFAX VA 22030 X DR OZLEM GOKER-ALPAN PRESIDENT 40.00 X X 0 0 0 UYENSA BEESE TREASURER / OPERATIONS DIRECTOR 40.00 X X 0 0 0 BOBBY SANDHU SECRETARY / LPN (THRU OCTOBER) 40.00 X X 0 0 0 LAUREN NOLL DIRECTOR / MANAGER (THRU OCTOBER) 40.00 X 0 0 0 0 0 0 745413 745413 CLINICAL RESEARCH 541700 2526588 2526588 TRANSLATION RESEARCH 541700 267084 267084 PATIENT EDUCATION 611710 55000 55000 2848672 13453 13453 610004 602730 7274 7274 7274 3614812 2848672 0 20727 X 606734 469263 137471 794257 786317 7940 150232 139583 10649 89858 80818 9040 53419 48045 5374 6580 6580 10639 10639 611161 604511 6650 4148 267 3881 224745 207286 17459 18198 16414 1784 166808 150026 16782 78406 77004 1402 252126 250343 1783 3052 3052 21607 19433 2174 35158 31621 3537 BOOKS/SUBS/REFERENCE 7586 6823 763 LICENSE & REGISTRATIONS 2136 1921 215 TAXES 240 240 3137090 2889675 243534 3881 85473 202243 50000 7776 1376590 422538 221864 46461 200674 1362888 863839 736814 2422363 2510395 26060 122973 64752 146302 506807 481544 928245 802543 1525864 1553362 X 896499 957033 896499 957033 2422363 2510395 X 477722 140779 -557967 0 X 0 0 0 X 420410 484468 491100 501823 745413 2643214 2243720 2535683 2860290 3921232 2848672 14409597 2664130 3020151 3351390 4423055 3594085 17052811 340000 377968 355000 390000 585000 2047968 0 340000 377968 355000 390000 585000 2047968 15004843 4 13453 13457 4 13453 13457 421 421 2664551 3020151 3351390 4423059 3607538 17066689 0.87920 0.00080 X SCHEDULE A, PART III, LINE 12, EXPLANATION OF OTHER INCOME: MISCELLANEOUS INCOME - 2021 AMOUNT: $ 421. 2022 AMOUNT: $ 0. 2023 AMOUNT: $ 0. 2024 AMOUNT: $ 0. 2025 AMOUNT: $ 0. SCHEDULE A, PART II THE ORGANIZATION HAS CHANGED ITS ACCOUNTING PERIOD AND FILED A SHORT-YEAR RETURN FOR THE PERIOD JANUARY 1, 2025, THROUGH OCTOBER 31, 2025 UNDER REVENUE PROCEDURE RULING 85-58. THEREFORE, FOR THE SUPPORT SCHEDULES, THE FIVE TAX YEARS INCLUDE THE SHORT YEAR NOTED ABOVE, AS WELL AS THE FULL CALENDAR YEARS 2021, 2022, 2023, AND 2024. SCHEDULE A, CHANGE OF STATUS LDRTC'S PRIMARY SOURCE OF REVENUE IS DERIVED FROM CLINICAL RESEARCH ACTIVITIES CONDUCTED IN FURTHERANCE OF ITS TAX-EXEMPT PURPOSE. ACCORDINGLY, LDRTC HAS EVALUATED ITS SOURCES OF SUPPORT UNDER THE PUBLIC SUPPORT TEST DESCRIBED IN SECTION 509(A)(2). CLINICAL RESEARCH REVENUE HAS BEEN TREATED AS GROSS RECEIPTS FROM SERVICES PERFORMED IN FURTHERANCE OF LDRTC'S TAX-EXEMPT PURPOSE AND REPORTED ON SCHEDULE A, PART III, SECTION A, LINE 2. BASED ON THE NATURE AND SOURCE OF LDRTC'S SUPPORT, LDRTC HAS COMPLETED SCHEDULE A, PART III RATHER THAN SCHEDULE A, PART II TO DETERMINE WHETHER IT QUALIFIES AS A PUBLICLY SUPPORTED ORGANIZATION UNDER SECTION 509(A)(2). RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 15650 15650 0 225106 165367 59739 181782 40847 140935 200674 RIGHT-OF-USE ASSET - OPERATING LEASE 725816 SECURITY DEPOSITS 10998 736814 OPERATING LEASE LIABILITY 802543 802543 DR OZLEM GOKER-ALPAN MD LLC LIMITED LIABILITY COMPANY OWNED BY LDRTC'S PRESIDENT 171646 LDRTC WAS PROVIDED WITH CLINICAL RESEARCH SERVICES BY DR. OZLEM GOKER-ALPAN, MD, LLC. DR. OZLEM GOKER-ALPAN IS THE OWNER OF THE MEDICAL PRACTICE. 0 FORM 990, PART III, LINE 3 EFFECTIVE OCTOBER 2025, FOLLOWING AMENDMENTS TO THE ORGANIZATION'S BYLAWS, LDRTC CEASED PROVIDING DIRECT PATIENT CARE AND CLINICAL TREATMENT SERVICES. DIRECT PATIENT CARE AND TREATMENT ARE CONDUCTED INDEPENDENTLY, WHILE LDRTC CONTINUES ITS CLINICAL RESEARCH ACTIVITIES AND OPERATES AS A NONPROFIT SCIENTIFIC AND EDUCATIONAL ORGANIZATION FOCUSED ON INDUSTRY-SPONSORED CLINICAL RESEARCH, INVESTIGATOR-INITIATED RESEARCH, BIOMARKER AND THERAPEUTIC RESEARCH, AND SCIENTIFIC, PROFESSIONAL, PATIENT, AND FAMILY EDUCATION. THIS ORGANIZATIONAL CHANGE DID NOT AFFECT LDRTC'S ONGOING RESEARCH AND EDUCATIONAL MISSION OR ITS EXEMPT PURPOSES. FORM 990, PART VI, SECTION A, LINE 8B THERE ARE NO COMMITTEES THAT CAN ACT ON BEHALF OF THE GOVERNING BODY. FORM 990, PART VI, SECTION B, LINE 11B THE DRAFT VERSION OF THE FEDERAL FORM 990 IS REVIEWED BY THE FULL BOARD OF DIRECTORS PRIOR TO FILING WITH THE INTERNAL REVENUE SERVICE. FORM 990, PART VI, SECTION B, LINE 12C IN CONNECTION WITH ANY ACTUAL OR POSSIBLE CONFLICTS OF INTEREST, AN OFFICER, DIRECTOR, OR EMPLOYEE MUST DISCLOSE THE EXISTENCE OF HIS OR HER FINANCIAL INTERESTS IN THE ORGANIZATION, INCLUDING BUSINESS AND FAMILY RELATIONSHIPS IN THE ORGANIZATION. EACH OFFICER, DIRECTOR OF EMPLOYEE IS REQUIRED TO COMPLETE A CONFLICT OF INTEREST DISCLOSURE QUESTIONNAIRE ON AN ANNUAL BASIS. ANY POSSIBLE DISCLOSED FINANCIAL INTEREST, OR BUSINESS AND FAMILY RELATIONSHIPS, IS REVIEWED BY THE LDRTC PRESIDENT TO DETERMINE IF A CONFLICT OF INTEREST EXISTS. (NOTE THAT A FINANCIAL INTEREST OR BUSINESS AND FAMILY RELATIONSHIP DOES NOT NECESSARILY CONSTITUTE A CONFLICT OF INTEREST.) IF THE PERSON DISCLOSING THE FINANCIAL INTEREST OR EXISTING BUSINESS AND FAMILY RELATIONSHIPS IS A CURRENT MEMBER OF THE BOARD OF DIRECTORS, SAID MEMBER SHALL LEAVE THE MEETING ROOM DURING THE DISCUSSION OF, AND THE VOTE ON, WHETHER A CONFLICT OF INTEREST EXISTS. FORM 990, PART VI, SECTION B, LINE 15 THE BOARD OF DIRECTORS ESTABLISHES PERFORMANCE METRICS FOR THE PRESIDENT. FOLLOWING THE CLOSE OF THE YEAR, THE BOARD OF DIRECTORS REVIEWS THE RESULT TO DETERMINE THE OVERALL LEVEL OF PERFORMANCE. A THIRD-PARTY COMPENSATION CONSULTANT IS ENGAGED TO REVIEW MARKET COMPENSATION FOR THE PRESIDENT AND KEY MANAGEMENT EMPLOYEES. THE BOARD OF DIRECTORS PROPOSES CHANGES IN COMPENSATION FOR THE PRESIDENT BASED ON PERFORMANCE OUTCOMES. ANY INCREASES IN COMPENSATION FOR KEY MANAGEMENT STAFF ARE PROPOSED BY THE PRESIDENT AND APPROVED BY THE BOARD OF DIRECTORS. THE LAST TIME A COMPENSATION STUDY WAS COMPLETED FOR THE PRESIDENT WAS DURING THE 3RD QUARTER OF 2023. FORM 990, PART VI, SECTION C, LINE 19 ALL GOVERNING DOCUMENTS AND COPIES OF POLICIES ARE AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G RESEARCH SERVICES: PROGRAM SERVICE EXPENSES 456,390. MANAGEMENT AND GENERAL EXPENSES 1,551. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 457,941. CONSULTANT SERVICES: PROGRAM SERVICE EXPENSES 101,486. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 101,486. 401K PLAN FEE: PROGRAM SERVICE EXPENSES 30,708. MANAGEMENT AND GENERAL EXPENSES 3,435. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 34,143. PAYROLL SERVICE FEE: PROGRAM SERVICE EXPENSES 7,492. MANAGEMENT AND GENERAL EXPENSES 838. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 8,330. EMPLOYEE RECRUITING: PROGRAM SERVICE EXPENSES 5,761. MANAGEMENT AND GENERAL EXPENSES 527. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 6,288. EDUCATION/TRAINING: PROGRAM SERVICE EXPENSES 2,674. MANAGEMENT AND GENERAL EXPENSES 299. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 2,973. FORM 990, PART XI, LINE 8 EXPLANATION OF PRIOR-PERIOD ADJUSTMENTS THE PRIOR-PERIOD ADJUSTMENTS CONSISTED OF ADJUSTMENTS TO ACCOUNTS RECEIVABLE RELATED TO OLD OUTSTANDING INVOICES AND ADJUSTMENTS TO ACCOUNTS PAYABLE RELATED TO OLD OUTSTANDING BILLS FROM PRIOR YEARS. THESE ADJUSTMENTS WERE RECORDED TO CORRECT BALANCES RELATED TO PRIOR-PERIOD TRANSACTIONS.