In addition to informal networking, family mentorship, and social media interfaces such as Facebook, the SLO Foundation sponsors a national scientific and family medical conference every other year to support families affected by SLOS.
After families receive a diagnosis of Smith-Lemli-Opitz syndrome, they are often challenged in finding credible information and support. Parents’ time and energy can be consumed by caring for their child who is living the real-time challenges of SLOS, leaving little left to seek, explore, and advocate for themselves.
As an advocate for families, Smith-Lemli-Opitz Foundation shoulders the efforts in networking and in gathering information from those living and working with SLO. The Foundation fosters relationships and disseminates useful information to help relieve some of the stresses involved in living with the syndrome.
Smith-Lemli-Opitz syndrome is a lifelong disorder with no cure and limited treatment options. It is often misunderstood.
Many individuals who have the syndrome remain undiagnosed for long periods of time or indefinitely.
It is the goal of the Smith-Lemli-Opitz Foundation to fund research that fosters an understanding of SLOS for a proper and clear diagnosis, effective treatments, and ultimately a cure.
You don’t have to go through life with Smith-Lemli-Optiz syndrome alone. Be in this together with us.