2026-05-15T15:46:36-04:00 2025-12-31 274760605 KULLMAN CPA LLC 888 BESTGATE ROAD SUITE 316 ANNAPOLIS MD 21401 990 2025-01-01 882591503 THE N 1 COLLABORATIVE INC N1CO 7726789669 7 CAROLE PLACE SOMERVILLE MA 02143 WINSTON YAN PRESIDENT 7726789669 2026-05-13 STEPHEN J KULLMAN CPA P00308157 4102669885 2026-05-13 2025 2025-03-06 01:10:19Z WINSTON YAN 7 CAROLE PLACE SOMERVILLE MA 02143 894517 false X WWW.N1COLLABORATIVE.ORG X 2022 DE TO MAKE INDIVIDUALIZED MEDICINES ROUTINELY AND RAPIDLY ACCESSIBLE TO RARE DISEASE PATIENTS WORLDWIDE. 6 6 2 60 0 453327 894517 0 0 0 453327 894517 0 0 263329 240529 0 48436 181845 83363 445174 323892 8153 570625 125543 696918 5306 6056 120237 690862 X TO MAKE INDIVIDUALIZED MEDICINES ROUTINELY AND RAPIDLY ACCESSIBLE TO RARE DISEASE PATIENTS WORLDWIDE. false false 72653 IN 2025, THE ORGANIZATION LAUNCHED TWO OPENLY ACCESSIBLE DATABASES TO SERVE PATIENTS, FAMILIES, RESEARCHERS, AND CLINICIANS WORKING IN THE INDIVIDUALIZED MEDICINE SPACE. THE GENE REGISTRY CATALOGS N-OF-1 PROJECTS, ASSESSED VARIANTS, AND MARKETED GENETIC THERAPIES, PROVIDING A CENTRALIZED RESOURCE TO ADVANCE AWARENESS AND KNOWLEDGE-SHARING ACROSS THE INDIVIDUALIZED MEDICINE FIELD. THE CONNECTIONS PLATFORM ENABLES PEER-TO- PEER NETWORKING ACROSS THE RARE DISEASE COMMUNITY, LINKING PATIENTS AND FAMILIES WITH ONE ANOTHER AS WELL AS WITH RESEARCHERS AND CLINICIANS WORKING ON RELEVANT CONDITIONS, AND HAS GROWN TO MORE THAN 400 COMMUNITY MEMBERS SINCE ITS LAUNCH. BOTH PLATFORMS ARE DESIGNED TO REDUCE THE INFORMATION AND ISOLATION BARRIERS THAT CHARACTERIZE ULTRA-RARE DISEASE. THE ULTIMATE BENEFICIARIES ARE PATIENTS WITH ULTRA-RARE GENETIC CONDITIONS AND THEIR FAMILIES, WHO GAIN ACCESS TO CRITICAL SCIENTIFIC INFORMATION AND A COMMUNITY OF INDIVIDUALS AND EXPERTS WHO CAN SUPPORT THEIR PATH TOWARD TREATMENT. 64432 THE ORGANIZATION HOSTED ITS ANNUAL MEETING AND A SERIES OF VIRTUAL SEMINARS IN 2025, EACH REACHING BETWEEN 100 AND 200 PARTICIPANTS ACROSS THE INDIVIDUALIZED MEDICINE ECOSYSTEM INCLUDING RESEARCHERS, CLINICIANS, PATIENT ADVOCATES, INDUSTRY REPRESENTATIVES, AND FAMILIES OF AFFECTED PATIENTS. EVENTS FEATURED SPEAKERS, PANELS, AND WORKSHOPS FOCUSED ON BEST PRACTICES, COMMUNITY UPDATES, AND FIELD-WIDE STRATEGY FOR ADVANCING INDIVIDUALIZED MEDICINES FOR ULTRA-RARE GENETIC CONDITIONS. BY CONVENING CROSS-SECTOR STAKEHOLDERS IN BOTH IN-PERSON AND VIRTUAL FORMATS, N1C'S CONFERENCES AND SEMINARS ACCELERATE KNOWLEDGE EXCHANGE, FOSTER COLLABORATION, AND BUILD THE SHARED INFRASTRUCTURE NEEDED TO MAKE INDIVIDUALIZED TREATMENTS MORE ROUTINELY AND RAPIDLY ACCESSIBLE TO PATIENTS. 43592 THE ORGANIZATION CONVENES OPEN, CROSS-DISCIPLINARY WORKGROUPS THAT BRING TOGETHER RESEARCHERS, CLINICIANS, AND RARE DISEASE STAKEHOLDERS TO DEVELOP SHARED FRAMEWORKS AND CONSENSUS RESOURCES FOR THE INDIVIDUALIZED MEDICINE FIELD. IN 2025, THE WORKGROUPS PROGRAM PRODUCED CONSENSUS GUIDELINES FOR ASSESSING THE ELIGIBILITY OF PATHOGENIC DNA VARIANTS FOR ANTISENSE OLIGONUCLEOTIDE (ASO) TREATMENTS. WORKGROUPS AND THEIR OUTPUTS ARE OPENLY ACCESSIBLE TO THE BROADER RARE DISEASE COMMUNITY, REACHING MORE THAN 1,000 COMMUNITY MEMBERS INCLUDING RESEARCHERS, CLINICIANS, AND PATIENT ADVOCATES. THE ULTIMATE BENEFICIARIES ARE PATIENTS WITH ULTRA-RARE GENETIC CONDITIONS, WHO GAIN ACCESS TO BETTER-INFORMED CLINICIANS AND RESEARCHERS EQUIPPED WITH SHARED STANDARDS TO EVALUATE AND ADVANCE INDIVIDUALIZED TREATMENT OPTIONS. 180677 true true false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false true 1 0 2 false false false false false false false false false X 6 6 false false false false false false false true true false false true true true true true true false true false X X EVA ZHECHEVA 9785488949 48 KENT ROAD LYNN MA 01904 X WINSTON YAN PRESIDENT 10.00 X X 0 0 0 JULIA VITARELLO SECRETARY 1.00 X X 0 0 0 TIM YU TREASURER 10.00 X X 0 0 0 HOLM GRAESSNER DIRECTOR 1.00 X 0 0 0 NICOLE BOICE DIRECTOR 1.00 X 0 0 0 BRIAN TSENG DIRECTOR 1.00 X 0 0 0 false false false 894517 894517 894517 213000 127800 42600 42600 11954 7172 2391 2391 15575 9345 3115 3115 27160 27160 21750 21750 22557 2978 19249 330 264 264 11632 11632 323892 180677 94779 48436 125543 696918 125543 696918 5306 6056 5306 6056 X 120237 690862 120237 690862 125543 696918 570625 X false false X 92600 397502 453327 894517 1837946 92600 397502 453327 894517 1837946 1837946 1837946 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED FORM 990, PAGE 2, PART III, LINE 4A IN 2025, THE ORGANIZATION LAUNCHED TWO OPENLY ACCESSIBLE DATABASES TO SERVE PATIENTS, FAMILIES, RESEARCHERS, AND CLINICIANS WORKING IN THE INDIVIDUALIZED MEDICINE SPACE. THE GENE REGISTRY CATALOGS N-OF-1 PROJECTS, ASSESSED VARIANTS, AND MARKETED GENETIC THERAPIES, PROVIDING A CENTRALIZED RESOURCE TO ADVANCE AWARENESS AND KNOWLEDGE-SHARING ACROSS THE INDIVIDUALIZED MEDICINE FIELD. THE CONNECTIONS PLATFORM ENABLES PEER-TO- PEER NETWORKING ACROSS THE RARE DISEASE COMMUNITY, LINKING PATIENTS AND FAMILIES WITH ONE ANOTHER AS WELL AS WITH RESEARCHERS AND CLINICIANS WORKING ON RELEVANT CONDITIONS, AND HAS GROWN TO MORE THAN 400 COMMUNITY MEMBERS SINCE ITS LAUNCH. BOTH PLATFORMS ARE DESIGNED TO REDUCE THE INFORMATION AND ISOLATION BARRIERS THAT CHARACTERIZE ULTRA-RARE DISEASE. THE ULTIMATE BENEFICIARIES ARE PATIENTS WITH ULTRA-RARE GENETIC CONDITIONS AND THEIR FAMILIES, WHO GAIN ACCESS TO CRITICAL SCIENTIFIC INFORMATION AND A COMMUNITY OF INDIVIDUALS AND EXPERTS WHO CAN SUPPORT THEIR PATH TOWARD TREATMENT. FORM 990, PAGE 2, PART III, LINE 4B THE ORGANIZATION HOSTED ITS ANNUAL MEETING AND A SERIES OF VIRTUAL SEMINARS IN 2025, EACH REACHING BETWEEN 100 AND 200 PARTICIPANTS ACROSS THE INDIVIDUALIZED MEDICINE ECOSYSTEM INCLUDING RESEARCHERS, CLINICIANS, PATIENT ADVOCATES, INDUSTRY REPRESENTATIVES, AND FAMILIES OF AFFECTED PATIENTS. EVENTS FEATURED SPEAKERS, PANELS, AND WORKSHOPS FOCUSED ON BEST PRACTICES, COMMUNITY UPDATES, AND FIELD-WIDE STRATEGY FOR ADVANCING INDIVIDUALIZED MEDICINES FOR ULTRA-RARE GENETIC CONDITIONS. BY CONVENING CROSS-SECTOR STAKEHOLDERS IN BOTH IN-PERSON AND VIRTUAL FORMATS, N1C'S CONFERENCES AND SEMINARS ACCELERATE KNOWLEDGE EXCHANGE, FOSTER COLLABORATION, AND BUILD THE SHARED INFRASTRUCTURE NEEDED TO MAKE INDIVIDUALIZED TREATMENTS MORE ROUTINELY AND RAPIDLY ACCESSIBLE TO PATIENTS. FORM 990, PAGE 6, PART VI, LINE 11B A COPY OF FORM990WILL BE PROVIDED TO EACH MEMBER OF THE GOVERNING BODY, VIA EMAIL OR AT A BOARD MEETING, PRIOR TO SUBMISSION TO THE INTERNAL REVENUE SERVICE. FORM 990, PAGE 6, PART VI, LINE 12C EACH BOARD MEMBER MUST SUBMIT A SIGNEDFORM ANNUALLY. FORM 990, PAGE 6, PART VI, LINE 15B THE BOARD OF DIRECTORS PARTICIPATES IN PRIVATE DISCUSSIONS TO DETERMINE A BASIS FOR THE SALARY OF EMPLOYEES. THE PROCESS USED TO ESTABLISH REASONABLE COMPENSATION WAS DETERMINED BY SEVERAL FACTORS INCLUDING, BUT NOT LIMITED TO: CENSUS DATA AND COMPENSATION REPORTS FOR COMPARABLE INDUSTRY POSITIONS, ANNUAL COST OF LIVING ADJUSTMENTS, JOB DESCRIPTION, ANNUAL PERFORMANCE REVIEW, ORGANIZATION'S BUDGET. FORM 990, PAGE 6, PART VI, LINE 19 THE GOVERNING DOCUMENTS ARE AVAILABLE UPON REQUEST.