We want to make our families aware of an upcoming SLOS webinar that the European Reference Network MetabERN, in collaboration with PD. Dr. Dorothea Haas (from our Medical and Scientific Advisory Board), and patient representatives are hosting on 18 February 2026 at 17.00 Central European Time (CET).

The webinar is open for families both inside and outside of Europe to attend and participate at no cost. Those who wish to attend will have to register at the latest by 18th February at 1pm CET. 

The webinar is part of the MetabERN Patient Therapeutic Education Programme. It aims to provide information about Smith-Lemli-Opitz syndrome (SLOS) and increase knowledge and understanding of SLOS symptoms from a holistic perspective for patients and their families. The webinar will be held in English. 

Agenda:
•⁠ ⁠PD Dr. Dorothea Haas will provide information about SLOS and the European SLOS Natural History Project with 112 patients with SLOS
•⁠ ⁠There will be 3 short videos of two children with SLOS  
•⁠ ⁠Results will be shared from of a European survey (76 families) to SLOS Families about SLOS symptoms and the challenges for health and everyday life 

More information about the webinar and where to register (deadline 18 February 2026, 13.00 Central European Time (CET), please follow the link below: 
https://metab.ern-net.eu/webinar-smith-lemli-opitz-syndrome-from-a-holistic-family-perspective/. 

Please note, for families unable to attend at the date and time above, we have been informed that the webinar will be recorded so that families are able to watch this at a later date. We will share the recording/video when it is made available to us.

Please let me know if you have any further questions or encounter any difficulties registering.

Thanks, everyone!