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