Programs

  • RAREis Global Advocate Grant Support

    We received a grant from #RAREis Global Advocate Grant. Now AMGEN The #RAREis Global Advocate Grant was established in 2022 to support the rare disease community by providing financial assistance to global advocacy groups working to advance, educate and address the needs of the community. The grant covered costs to translate, print medical concentrations documents and to ship the documents to our members. In an effort to support the SHINE syndrome community with their doctors.
    Geographies
    Not indicated
    Dates
    Jan 1, 2023 – Dec 31, 2023
    Source
    990
    No causes provided
    No populations provided
    –
    –

  • Research Program Donations Support

    The rest of the donations were individual donations to support our research programs. One of our donations was from a community outreach. It was also part of the marathon donations.
    Geographies
    Not indicated
    Dates
    Jan 1, 2023 – Dec 31, 2023
    Source
    990
    No causes provided
    No populations provided
    –
    –

  • Research Program Donations Support

    The rest of the donations were individual donations to support our research programs. One of our donations was from a board member. He matched donations for the marathon.
    Geographies
    Not indicated
    Dates
    Jan 1, 2023 – Dec 31, 2023
    Source
    990
    No causes provided
    No populations provided
    –
    –