We are here together. Let us support you.

Support Resources

Encouragement and a path to the answers you need to care for yourself and your loved one living with Smith-Lemli-Opitz syndrome.
Empowering families with help and hope.

Family Support

You didn’t expect to be here. We know this feeling.

As you navigate life with Smith-Lemli-Opitz syndrome, take us along.
You won’t regret it.

Our goal is to empower you with credible resources, help from others living the real-life experiences of SLOS, and enable relationships that inspire health and hope in you and your family.

little girl being held up
little girl getting help
It's never too early to seek help.

Early Intervention

The Smith-Lemli-Opitz Foundation encourages you to seek out services early to intervene and aid your disabled or delayed child affected with SLOS.

Early Intervention services and supports are available to babies and young children with developmental delays and disabilities and their families.

These services and supports may include:

  • speech therapy
  • physical therapy
  • and other types of services based on the needs of the child and family.

These services can have a significant impact on a child’s ability to learn new skills and overcome challenges and can increase success in school and life.

Click the button below to find the Early Intervention programs in your area. At this time, the link describes United States of America and the UK respectively, plus surrounding program areas.

You matter here.

Ways we support you

the Official Smith-Lemli-Opitz Foundation Parent Group

on Facebook

The Official Smith-Lemli-Opitz Syndrome Foundation Parent Group

A private forum for Parents (only) of individuals with Smith-Lemli-Opitz syndrome to provide support and information for other parents. We review each request to join the group and reserve the right to deny entry into the group.

To be considered a member of this Facebook group:
  1. You must be a parent or legal guardian of an individual with Smith-Lemli-Opitz syndrome, not an extended family member. Click the button below to learn about opportunities for extended family members to help our mission.
  2. The family must have already received an SLOS diagnosis (not be in the process of testing).
  3. The parent or legal guardian must completely answer all the qualifying questions required upon requesting to join the group.

by Request

Smith-Lemli-Opitz Family Mentor

Want someone to talk to?
Guidance, direction, and feedback from someone who is living with or familiar with Smith-Lemli-Opitz syndrome?

Complete and submit the form below and we will help connect you to a Smith-Lemli-Opitz Foundation Family Mentor.

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Medical professional line graphic

by Request

Smith-Lemli-Opitz Medical Specialist

Submit the request form below and we will help connect you with a Smith-Lemli-Opitz Medical Specialist.

Let us help you find the support you need.

Request Forms

Click on the form titles below to view and use the forms. 

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Request a
SLOS Family Mentor

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Request a
SLOS Medical Specialist

Smith-Lemli-Opitz Foundation circular logo

SLOS Conferences

2023 Conferences are June 22nd-24th

The Smith-Lemli-Opitz Foundation sponsors regular biennial national scientific and family medical conferences where physicians, scientists, parents, siblings, and caregivers can learn more from each other and collaborate. Register below!

Friends at a Smith-Lemli-Opitz Conference

Details

Embassy Suites by Hilton Seattle
Tacoma International Airport
15920 West Valley Highway
Seattle, Washington, USA 98188

Scientific Medical Conference

Family Medical Conference

Steps to Register

• Click the desired conference registration button to register for the conference on the Eventbrite website.

• Click the “Get Tickets”  button and enter the number of tickets (for the conference attendees).

• Click the “Check out” button and enter your information on the Eventbrite registration form and submit your payment.

• If you’d like to stay at the  Embassy Suites by Hilton Seattle Tacoma International Airport follow the directions below.

If you’d like to stay at the Embassy Suites by Hilton Seattle click the button below to reserve a room in the conference block of rooms by May 24th, 2023.

Those needing a special ADA room should call Noelani Corpin directly: +1 (206) 219-2144

Call to Reserve a Room

If you’d like to stay at the Embassy Suites by Hilton Seattle reserve a room in the conference block of rooms by May 24th, 2023.

Call +1-800 Embassy (+1-800-362-2779)
Reference Group Code: 91G

If you need a special ADA room should call Noelani Corpin directly: +1 (206) 219-2144

Fueling life with SLOS

Nutrition

Individuals with Smith-Lemli-Opitz syndrome have specific nutritional needs. Knowing and responding to these needs improves and maintains the health of individuals with SLOS.

Watch the video on the right and listen to a clinical Research Dietitian describe these needs.

Supplementing Cholesterol with meals

Cookbook

A group of bionutritional professionals published a cookbook of recipes to help those affected by Smith-Lemli-Opitz. These recipes help caregivers supplement the cholesterol needed by those with SLOS in meals prepared at home.

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Giving the body what it needs

Cholesterol Supplementation

Researchers continue to work on improved treatments and therapies for Smith-Lemli-Opitz syndrome.

Listen to Dr. Forbes D. Porter discuss cholesterol supplementation and other therapies in the video on the right.