Three teams competed at the Zurich Marathon for NP Suisse today. All teams have shown great commitment. Thank you very much! Results Team 1, Results Team 2, Results Team 3.

General Assembly of NPSuisse was held on Saturday in Hünenberg - with international guests from Germany and England and also CVP Parlement Member Gerhard Pfister was on site. Photos on Facebook. Minutes of the GA.

New explanatory video on ASMD in German and French

https://f.io/PjLDIFMs

Dear members, dear donors, dear friends,

Last summer, Dr Marianne Rohrbach drew our attention to a new NP-C case. Christoph Poincilit and Sylvain Schärli immediately agreed to get in touch. We have not heard back since then. Dr Rohrbach estimates that there are currently around 20 cases in Switzerland. After the death of Simon Benz, NPSuisse only knows of 8 patients who are still fighting. A few months ago there were. We have had several conversations with doctors. New patients are probably reluctant to meet and socialise with other NP-C families. NPSuisse is shrinking, and given the age of Peter Henggeler and Christoph Poincilit, the question arises :  what next?

On 3 May at the GA, there will be a discussion with all those present, those affected and those not affected. We hope that as many people as possible will take part. Christoph Poincilit will present options for the future, but may not know all of them. We would be pleased if you could also express your opinion in preparation for our GA. After the meeting, the Board will make a decision on the future of NPSuisse. There will be no change until the beginning of 2026.

Our GA will take place as usual at 10:00 in the Böschhof Hünenberg.

The Board of Directors

We wanted to make the scientific lectures from October 22nd and 23rd, 2022 accessible via a streaming address with a 24-hour delay on the Internet. Now we also want to consider the confidentiality of the LVM. Therefore, no streaming but video access via our websites will be organized after the conference (see Scientist’s Corner).

It is planned to send an e-mail to all potentially interested viewers with a link to the websites s and video addresses.

The annual report 2021 by Christoph Poinciliit and the white paper mentioned in it are available for download. Annual report | White paper

The Loire Valley Meeting 2022 will be followed by the Reuss Valley Meeting 2024 from October 17th to 20th, 2024

Ten years have passed and the Loire Valley Meeting took place in France last October (see Scientist’s Corner).

In order to promote the sustainability and future of the meeting, NPSuisse, in cooperation with SHG Germany, decided to bring the NP-C scientific meeting to Switzerland, more precisely to Zug.

Michael and Regula Werder, the operators of the Böschhof Kultursilos, have been friends of the Poincilit family for many years and will continue the traditional hospitality of the "Loire Valley Meetings" in Hünenberg ZG.

The Reuss Valley Meeting took place in Hünenberg on October 18-19, 2024.

The event was very successfully organized by Regula and Michael Werder.

Here is a short video with the special atmosphere of the Loire Valley Meeting: https://vimeo.com/1027758103/f39c1eb2e5

In 2026 the event will take place in Oxford: Thames Valley Meeting (TVM).