Programs

  • Program 1 [2020]

    OUTREACH SERVICESPROVIDE CAPACITY BUILDING EDUCATIONAL AND CONNECTIVE NETWORKING OPPORTUNITIES TO PATIENTS, CAREGIVERS AND DISEASE FOUNDATIONS VIA IN PERSON MEETINGS, PRINT AND ONLINE TOOLS AND ONLINE EDUCATION.
    Geographies
    Not indicated
    Dates
    Jan 1, 2020 – Dec 31, 2020
    Source
    990
    No causes provided
    No populations provided
    –
    $4.4M

  • Global Genes Advocacy Program

    GLOBAL GENES' PROGRAMS PROVIDE NEXT-GENERATION PATIENT ADVOCATES WITH A CONTINUUM OF SERVICES TO ACCELERATE THEIR PATH FROM EARLY SUPPORT AND AWARENESS THROUGH RESEARCH READINESS, USING A COLLABORATIVE APPROACH THAT INVOLVES BIOPHARMA, RESEARCHERS AND FUNDERS, WITH DATA AS A CENTRAL CORE. WE AIM TO HAVE A SIGNIFICANT IMPACT ON THE LIVES OF PEOPLE LIVING WITH RARE DISEASES BY BRINGING THE COMMUNITY TOGETHER AROUND OUR THREE PILLARS OF SUPPORT, EDUCATION, AND RESEARCH, WHILE WEAVING HEALTH EQUITY THROUGH ALL OF OUR INITIATIVES TO FOSTER A CULTURE OF INCLUSION. OUR PROGRAMS ARE DESIGNED TO HELP OUR PARTICIPANTS DEVELOP THE SKILLS THEY SEEK TO BUILD ORGANIZATIONS, BECOME RESEARCH READY, AND PURSUE THE DEVELOPMENT OF TREATMENTS.
    Geographies
    Not indicated
    Dates
    Jan 1, 2023 – Dec 31, 2023
    Source
    990
    No causes provided
    No populations provided
    –
    $6.8M