The Official Smith-Lemli-Opitz | RSH Foundation Website
The Smith-Lemli-Opitz | RSH Foundation is a non-profit organization dedicated to supporting families, individuals and professionals dealing with Smith-Lemli-Opitz syndrome. By providing a network of ongoing communication, funding related research, and raising awareness, we are committed to enhancing the quality of life of affected individuals while improving on current treatment methods and striving towards a cure.
The Smith-Lemli-Opitz | RSH Foundation was created in 1988 to give a group of 37 families with SLO | RSH children a network to exchange experiences and information about SLO | RSH. Since then, the group has grown to more than 200 families in the United States and across the world.
The Foundation, in conjunction with volunteers, set up e-mail groups for families to contact each other informally. This provides immediate support for families to ask questions, share in joyful times and share in grief or frustration. Additionally, the Foundation provides regular newsletters, family support, family contact information, specialist contact information, information about ongoing research, and it sponsors regular national meetings where physicians, scientists, and parents can meet to learn more from each other. Another goal of the Foundation is to raise and provide funds to promote research into treatments and ultimately a cure for SLO | RSH Syndrome.
JOIN THE FOUNDATION TODAY: $25.00 Lifetime Membership
Click for information on the SLOS STAIR Research Study 7001 – currently recruiting: http://rarediseasesnetwork.epi.usf.edu/stair/studies/7001-SLOS.htm