Dear families, relatives, those affected and those interested

SLO Deutschland e.V. welcomes you!

After the diagnosis of Smith-Lemli-Opitz syndrome (SLO syndrome) has been made, it is initially very normal for fears and insecurities to determine one’s own thoughts and actions. It then becomes clear quite quickly that very specific questions and hurdles arise because this syndrome is so rare and many doctors and therapists are not familiar with it.

We as SLO Deutschland e.V. offer the opportunity to find out about the syndrome and to get in touch with other affected families, especially from German-speaking countries, and to support one another.

We are a parents’ initiative that was founded in 2001 by families with children who have Smith-Lemli-Opitz syndrome.

To date, our association has over 60 families and individuals. We actively exchange information in our own WhatsApp group, but also in personal conversations at our annual meetings. The date and location of the meetings will be announced on our website. Registration is also done on the website.

Our goal is to offer those affected a platform where they can find support, information and valuable contacts. Geographical proximity helps in finding the right doctors, clinics, therapies and aids. In topics such as insurance, social services and integration, collective knowledge is often more useful than any official advice. Sometimes it also helps to simply exchange ideas with others who are experiencing similar challenges.

Regardless of whether the diagnosis has just been announced or has been known for a long time – everyone is welcome here and will not be left alone with their questions and fears.

If you would like to become part of our community, contact us via our website https://slodeu.wixsite.com/home
or via info@slo-deutschland.de.

We look forward to getting to know you!

Simone Haustein and Christin Jung
Board of SLO Deutschland e.V.

Contact information:
SLO Deutschland e.V.
Email: info@slo-deutschland.de
Address: SLO Deutschland e.V.
Zur Beule 36b
04720 Döbeln
Germany