Programs

  • Smith-Lemli-Opitz Foundation Support Services

    The Smith-Lemli-Opitz (SLO) Foundation provides education and support services to families and medical professionals dealing with Smith-Lemli-Opitz syndrome (SLOS). Originally, the Smith-Lemli-Opitz (SLO) Foundation was founded in 1990 by 37 families who desired a network of support to exchange experiences and information about SLOS. Since then, the patient advocacy group has grown to more than 2,000 families in the United States and around the world. The SLO Foundations website (smithlemliopitz.org) is often a parents first point of contact after their child has been newly diagnosed with SLOS. Within the website, families find a syndrome overview and related research articles, contact information for SLOS specialists, educational materials, and access to family mentors. The foundation sponsors an online library of conference videos and other webinars related to SLOS. The foundation has three active family support groups in Facebook and is active other various social media groups. This medium provides immediate support for families to ask questions and share in joyful times and in grief. The SLO Foundation hosts biennial family and scientific SLOS conferences around the country where physicians, scientists, and parents learn more about the syndrome and connect with each other. Another important mission of the SLO Foundation is to raise funds to promote research and better health treatments into the disorder.
    Geographies
    Not indicated
    Dates
    Jan 1, 2023 – Dec 31, 2023
    Source
    990
    No causes provided
    No populations provided
    –
    $169.5K