Swiss Narcolepsy bulletin n. 6 | December 2023

Message from the Board

Prof. Dr. C Bassetti; Prof. Dr. R Khatami; Dr. E Werth; Prof. Dr. S Miano; Dr. E Wenz; 

Dear readers,
 
with the Winter edition of our newsletter, 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).

We already approved 2 reference centers (Bern and Barmelweid) and other 5 are currently being reviewed.

The institutional members are actively collecting data on narcolepsy and related disorders of hypersomnolences at SNaNe database. 

The SNaNe General Assembly have been on 31st August, during the SSSSC/SGSSC annual meeting 2023, on August 31 – Friday, September 1, 2023, and a report of our activity have been reported and approved (webinar, scientific activity, Narcolepsy day, finances, discharge of the Board). We also organized a SNANE symposium during the SSSC/SGSSC annual meeting 2023, which was a success of participation. 

The 14th edition of the European narcolepsy day have been organized in Leiden, on 11th and 12th November, with a great participations of professionals and patients. 

We warmly invited you to join the next case discussion webinars which will be held on 8th January 2024 from 4:00 to 5:00 PM CET (Join link). 

Enjoy this newsletter, containing an update about the iSPHYNCS study and papers submitted (see Ongoing research section), a letter from Prof. Dr. J. Mathis, Vice President and Medical Advisor Swiss Narcolepsy Society (SNaG) (see patient corner), and last but not least a portrait of Prof. Mehdi Tafti. 

Last but not least, we're happy to announce that the SNaNe can now count on 3 additional valuable Board Members: Sigrid Von Manitius (St Gallen), Alexandra Datta (Basel), Josè Haba-Rubio (Lausanne).

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

Portrait of SNaNe Members

Prof. Mehdi Tafti

Faculty of Biology and Medicine

Department of Biomedical Science, University of Lausanne

Mehdi Tafti is neurophysiologist and geneticist with 38 years of experience in both basic and clinical sleep research. He was a full professor at the Department of Biomedical Sciences of the University of Lausanne till September 2023. He was also the co-founder in 2006 and co-director of the Center for Investigation and Research in Sleep (CIRS) at the Lausanne University Hospital till 2018. 
The main fields of his research have been focused on molecular genetics of sleep and central hypersomnias, parasomnians, as well as pharmacology of sleep disorders.  He has coordinated the EU-NN genetic studies in narcolepsy and was among the founding members of the SNaNe and co-PI of the SPHYNCS. His laboratory discovered the first genes regulating several aspects of sleep and sleep EEG in mice as well the only causal gene mutations in familial and sporadic narcolepsy and Kleine-Levin syndrome. More recently, his laboratory discovered that hypocretin deficiency in narcolepsy may not be due to an autoimmune process but the epigenetic silencing of the hypocretin gene.

Ongoing Research

The iSPHYNCS Recruitments is started, with the first patient recruited from Germany, in April 2023, and it will continue for 4 years. The REDCap iSPHYNCS Database with multilingual support have been implemented. 
Several posters and presentation have been made for the EAN Conference, Budapest, July 2023, for the World Sleep Conference, Rio de Janerio, Oct 2023, for the EU‐NN Narcolepsy Days in Leiden, Nov 2023. 
A communication paper titled the Swiss Narcolepsy network (SNANE), written by the Board have been published on the journal Clinical and Transational Neuroscience (CTN). 
Two papers on the SPHYNCS study have been submitted to Sleep and to CTN, and several are on preparations.

Patient corner

40 years anniversary of SNaG/SSNa 

The SNaG/SSNa is the Swiss patient organization of patients with narcolepsy and other causes of hypersomnia. Our Society was founded at the 26.3.1983 in the University Hospital in Zurich by 20 most idealistic members under the name of “Schweizerische Narkolepsie Gesellschaft” (SGN) or “Société Suisse pour La Narcolepsie” (SSN). Because of the similar abbreviation of the Swiss Neurological Society (SNG) the name was changed some years later into SNaG and SSNa respectively.
The first president was Dr. Albert Wettstein and Prof. Christian Hess was one of the 6 members in the founding board. Among the professional advisory board a social worker, a lawyer, a career counsellor as well as the sleep researchers Prof. Rudolf Hess and Prof. Alex Borbély were listed.
In September 2023 our Society celebrated the 40th anniversary by organizing a 3-day event in the seminar hotel Eckstein in Baar, when medical lectures alternated with workshops and social offerings. Among the 50 attendees one single member of the founding assembly was still participating despite his 89 years of age.

Today patient association has reached almost 200 members and many social activities are offered throughout the year and written information are available to the members through the WEB site and distributed twice per year by the NEWS information bulletin, each containing 40 pages of relevant medical and organizational contributions.

We are grateful to physicians recommending patients with narcolepsy/hypersomnia to join the SNaG/SSNa.

Upcoming Events

SNaNe Clinical Case Discussion
Webinar 12 | 08.01.2024

Join the next SNaNe Clinical Case Discussion on 8th January 2023!

Participation is free of charge and open to public

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

2024 Calendar

8th January  |  5th February  |  4th March  |  8th April

6th May |  3rd June  |  8th July  |  9th September 

7th October  |  4th November  |  2nd December 

9th Swiss Narcolepsy Day
St. Gallen | 24.10.2024

Save the date for the next Swiss Narcolepsy Day!

Venue: 
KantonSpital St. Gallen

Local Organizer:
Dr. Sigrid Von Manitius

Further information will follow, stay tuned!

Swiss Narcolepsy Database - Institutional Membership of the SNaNe

The SNaNe plans to launch a national Swiss database on narcolepsy. The basic idea is to run a scientific database and prospectively collect data on narcolepsy and related disorders of hypersomnolences. 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 database is implemented as a web-application using the Redcap data platform. The SNaNe 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?

Did you know that the delay of diagnosis for narcolepsy is still around 10 years in European countries including Switzerland? The main factors predicting a longer diagnostic delay are being a child, a female and a low frequency of cataplexy

Tell a Friend

Invite colleagues and friends  to join the Official SNaNe Newsletter.

Share this email with your community