Swiss Narcolepsy bulletin n. 9 | February 2025

Message from the Board

Prof. Dr. C Bassetti; Prof. Dr. R Khatami; Prof. Dr. S Miano; Dr. Sigrid von Manitius, Prof. Dr. Alexandre Datta, DR. José Haba-Rubio; 

Dear readers,
 
With the Winter edition of our newsletter, we are happy to announce the recognition by Kosek as reference network for Rare Sleep Disorders (ORPHA:68354), including, but not limited to:

• Narcolepsy (ORPHA:619284);
• Central disorders of hypersomnolence, i. e. Idiopathic hypersomnia (ORPHA:33208), Non-24-hour sleep-wake syndrome (ORPHA:73267), Familial advanced sleep-phase syndrome (ORPHA:164736), NRXN1-related severe neurodevelopmental disorder-motor stereotypies-chronic constipation-sleep-wake cycle disturbance (ORPHA:600663), Klein-Levin syndrome (ORPHA:33543);
• Autoimmune encephalopathy with parasomnia and obstructive sleep apnea (ORPHA:420789) and Autosomal dominant cerebellar ataxia-deafness-narcolepsy syndrome (ORPHA:314404).

The following centers of our network received the recognition as reference center for Rare Sleep Disorder (RSD), and are registered also in the website of ORPHANET:  

Sleep-Wake-Epilepsy-Center (SWEZ)
Inselspital Bern, Department of Neurology

Center of Sleep Medicine Barmelweid
Klinik Barmelweid 

Sleep Unit

Neurocenter of Southern Switzerland
 EOC, USI, Lugano

Center for sleep medicine
Health Ostschweiz Kantonspital,

St. Gallen

Center for Investigation and Research in Sleep (CIRS) 

CHUV, Lausanne

Centre for Epileptology, Sleep Medicine, and Chronobiology

UKBB, Basel

We changed the name of our network to SNANE-RSD and changed accordingly.

We are happy to announce the addition of two Institutional members: the Center for Investigation and Research in Sleep (CIRS) - CHUV, Lausanne and the University Children’s Hospital Basel (UKBB), Centre for Epileptology, Sleep Medicine, and Chronobiology at the Basel University Hospital.

We would like to remind you about the possibility to apply for a SNaNe institutional membership for your institution on the SNaNe website (find out more about it here: Affiliated Centers – Swiss Narcolepsy Network-Rare Sleep Disorders).

Enjoy this newsletter, containing an interview of the President of SNaNe-RSD, Prof Bassetti, who will explain in details the important recognition of SNaNe-RSD as reference network of rare disease, by Kosek. 

Please, also visit our website, where you can find current and old editions of our newsletter.

SNaNe-RSD Narcolepsy Symposium

During the SSP/SSTS – SSSSC Joint Annual Meeting, taking place in Geneva on May 15-16, 2025, SNaNe-RSD will host a special symposium on narcolepsy.

Friday May 16
from 11:15 AM to 12:30 PM
Palaexpo, Geneva (Room E)

Additionally, all SNaNe-RSD members are invited to the SNaNe-RSD General Assembly, which will be held earlier in the day from 12:30 to 13:30 (Room Zeta). This is an important occasion for members to come together, discuss updates, and shape the future of our organization.

Interview to Prof. Claudio Bassetti - SNaNe-RSD activities

Enjoy the interview to Prof. Claudio Bassetti, president of the SNaNe-RSD, highlighting the organization's efforts to raise awareness, promote research, and educate on narcolepsy through events and partnerships.

Ongoing Research

The Redcap SNaNe Database is growing (already 234 patients included), most data result from the SPHYNCS study, but direct entering of data in SNaNe database is possible and have been made.
I-SPYHNCS study has obtained recently the approval of the amendments by the Swiss ethical committee and we have recruited 281 so far.

Upcoming Events

SNaNe Clinical Case Discussion #25
Webinar 25 | 03.03.2025

SNaNe Clinical Case Discussion #26
Webinar 26 | 07.04.2025

Join the next SNaNe-RSD Clinical Case Discussions

Participation is free of charge and open to public.

Don't miss the chance to submit and present your clinical case for the upcoming webinars!

SNaNe Symposium on Narcolepsy  

@ SSP/SSTS – SSSSC Joint Annual Meeting

Palaexpo Geneva | May 16th

11:15 - 12:30

SNaNe-RSD General Assembly

@ SSP/SSTS – SSSSC Joint Annual Meeting

Palaexpo Geneva | May 16th

12:30 - 13:30

All SNaNe-RSD members are invited to the SNaNe-RSD General Assembly, this is an important occasion for members to come together, discuss updates, and shape the future of our organization

9^th Sleep Medicine School

Nicosia, Cyprus | 31^st March - 3^rd April 2025

The 9th ESF Sleep Medicine School is one of the world’s leading educational programs on sleep disorders offering a comprehensive and immersive learning experience in sleep medicine. This year’s theme, SLEEP & HEALTH, offers diverse educational lectures exploring the intersection of sleep, health, disease, and technology, with a focus on emerging innovations. Interactive courses and hands-on-workshops will provide essential training, bridging theory with clinical practice.

Topics:

• INSOMNIA - RESTLESS LEGS SYNDROME
• CENTRAL HYPERSOMNOLENCE DISORDERS / DAYTIME SLEEPINESS
• CIRCADIAN MEDICINE / PARASOMNIAS
• SLEEP-RELATED BREATHING DISORDERS

Early Bird fee deadline: 1st march 2025

Swiss Narcolepsy Database - Institutional Membership of the SNaNe

The SNaNe database is designed as a long-term project to integrate clinical and preclinical data, including sleep studies and biosamples (blood and cerebrospinal fluid) at inclusion and at regular follow-up visits. The SNaNe-RSD database is implemented as a web-application using the Redcap data platform. The SNaNe-RSD invites Swiss sleep centers who are experienced with clinical care of narcolepsy and other patients with hypersomnolences to join the database as institutional member. The institutional members must follow Good Clinical Practice “GCP-guidelines”.

Institutions Login information will be provided upon application for institutional members.

Only SNaNe institutional members will have access to data of their own study site.

Did you know?

Narcolepsy affects 1 in 2,000 people, causing sudden sleep attacks and daytime drowsiness. Early diagnosis greatly improves life quality!

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