Support,
resources & hope
for lives affected by Smith-Lemli-Opitz syndrome.
learn the basics and the latest
find support in a caring network
increase your confidence and hope
A network of professionals, supporters, and more than 1,000 families from around the world who share experiences and information about Smith-Lemli-Opitz syndrome
2025 SLOS CONFERENCE
BOSTON, Massachusetts USA
Family Medical Conference
June 20th - 21st, 2025
Register for the conference today!
The first 28 families to register • pay for tickets • AND • reserve a room in the room block
will qualify to receive a Harper Wolinetz Conference Travel Scholarship
worth $250 OFF their room charges.
Thank you to the Carrie and Lou Wolinetz Family who fund these amazing travel scholarships
in memory of their daughter, Harper.
What it is
About
Smith-Lemli-Opitz
Smith-Lemli-Opitz syndrome (SLOS) is a rare genetic condition caused by the inability of the body to make enough cholesterol to support normal cellular function, growth, and development.
Disease severity varies greatly, even within the same family. Some affected individuals may have near-normal development with only minor congenital abnormalities, while others may be profoundly affected with life-threatening birth defects.
The genetics of
Smith-Lemli-Opitz Syndrome explained
This explainer video was provided by Mirum Pharmaceuticals at the request of the Smith-Lemli-Opitz Foundation. To read more about the syndrome, click the button below.
Who we are
The Foundation
The Smith-Lemli-Opitz Foundation is an international, nonprofit organization made up of families impacted by Smith-Lemli-Opitz syndrome (SLOS), volunteers, and medical professionals committed to improving the quality of life for individuals with SLOS.
Since its beginning in 1990, the Foundation has grown from a small number of parents into a global organization that provides networking and consistent support to SLOS families. Led by board members who have been personally touched by SLOS, the Foundation sponsors biennial scientific and family medical conferences, hosts regular educational webinars, funds scientific research, and strives to raise awareness about the diagnosis and treatment of SLOS.
To learn more about the leadership of the Smith-Lemli-Opitz Foundation, click the button below.
Our Mission
Improving
the quality of life
The Smith-Lemli-Opitz Foundation works worldwide to improve the quality of life for people with Smith-Lemli-Opitz syndrome through education, supporting families, spreading SLOS awareness, and financial support for research into the disorder.
What we offer
Smith-Lemli-Opitz syndrome (SLOS)
is a rare genetic condition
and when it does occur, finding reliable information and support can be challenging.
Currently, there are no cures for Smith-Lemli-Opitz. Our mission aims to change that.
In the meantime, we work to improve the quality of life for those affected by and working with the syndrome.
Impacted by SLOS?
Newly diagnosed? Living with it?
Start Here.
Learn from others in this network
You don't need to go through this alone.
We can help.
Support our mission
Help us improve the quality of life for individuals affected by SLOS.
Need something else?
Contact us with your specific needs.
We’ll get you closer to the specialist, support, or information to help you.
Helping those affected by SLOS live each day with confidence and hope
Helping those affected by SLOS live each day with confidence and hope
Why join us?
You won't be alone.
Whether you are a medical professional or a family impacted by SLOS, together is better.
Become a member of the foundation today.
Testimonials
What Our Members Say
to be an incredible resource for
new families and veteran parents.
It is our go-to for support and encouragement from others going
through the same issues."
How Membership Works
Follow the steps below to be a member of the Smith-Lemli-Opitz Foundation
Register
Become a Lifetime Member by completing a form online or to submit by mail.
Be notified
Watch your inbox and mailbox for information released from the foundation.
Work Together
Collaborate with families and medical professionals to support those with SLOS.
News & Events
Read all about what is happening with the Smith-Lemli-Opitz Foundation.
A SLO Family Story Released
The book “I Want to Survive” tells the journey of a family as they raise a child with a rare genetic disorder called Smith-Lemli-Opitz.
John Marius Opitz 1935-2023
With deep sadness, the Smith-Lemli-Opitz Foundation announces the passing of Dr. John Marius Opitz, who co-discovered SLOS.
Rare Disease Day
Happy Rare Disease Day! The Beyond the Diagnosis exhibit at the EVERSANA National Meeting featured one of our own.
Frequently Asked Questions
Here are some we often hear and answer.
While membership is free for a lifetime, fees may be associated with participation in or attendance of conferences and networking events. Participation in these events is optional and voluntary and does not affect membership status.
You can support our mission in various ways! You can host a fundraiser, volunteer, donate, serve on a committee, etc.
Visit the pages on our "How to Help" menu to learn more!
The Smith-Lemli-Opitz Foundation is a responsive and engaged network of medical professionals and families who support each other and serve to improve the lives of those affected by Smith-Lemli-Opitz.
A free lifetime membership to the Foundation is available to those desiring to access new information about SLOS and its treatments as well as be part of a supportive network of others living with SLOS in real-time.
We connect you to more than pages about SLOS, we connect you to a network of support.
Each member of the Smith-Lemli-Opitz Foundation Medical and Scientific Advisory Board has extensive experience in the treatment and/or research of SLOS. Members include experts in the fields of psychology, biochemistry, pharmacology, pediatrics, behavioral science, and the treatment of metabolic disorders.
Visit our • FUNDRAISE • page to review our fundraising guidelines and apply to host a fundraiser.
The Smith Lemli Opitz Foundation does not provide medical advice. Any content provided on the Smith Lemli Opitz Foundation website is for informational purposes only and is not a substitute for professional medical advice. Please consult your personal medical professional for any questions you may have about any medical condition. Smith-Lemli-Opitz Foundation does not endorse or recommend any particular provider, testing, product, procedures, opinion, or other information which may be mentioned on this website.
Visit our • WAYS TO GIVE • page to see the giving options we have available for you to use.
The Smith-Lemli-Opitz Foundation hosts conferences, online meetings, networking, and fundraising events.
Members of the Foundation are notified of these events through regular communications from SLOF. Participation in these in-person events is optional, voluntary, and does not affect SLOF membership status.
Ready for support?
Want to help?
Join us today.
You don’t have to go through life with Smith-Lemli-Optiz syndrome alone. Be in this together with us.
