International Niemann–Pick Disease Alliance

The 21st Niemann-Pick Sielbstilfegruppe Family Support Meeting – Overview

The 21st  Niemann-Pick Sielbstilfegruppe family support meeting took place in Kassel last weekend on Saturday 27th May.  This was the 17th year that it has been held in the same location, one ideally positioned in the geographical centre of Germany. There were 56 attendees, of which 32 were members.  The meeting started with the NPS business meeting and elections.  Gabby Grillenberger, a wonderful supporter, who has served the organisation since its inception as secretary and then chair stepped down from the official duties but is staying involved with the Group. Thank you Gabby for making such a difference! Gabby is succeeded as chair by Sabine Fornfeist who many of you will know as a tireless worker for NPD. Congratulations Sabine. The programme was informative and varied. It included:

  • A trial overview from a family member who is a clinician – Dr Lisa Tauszig
  • The development of IT and social media communication used by NPS – Jakob Hendess (volunteer IT co-ordinator)
  • An overview of Gene therapy as a developing field – Prof. Stefan Kochanek   
  • An explanation of the need for, and organisation of, clinical trials – Prof. Marc Patterson (Delivered in German!)
  • A presentation on current ASMD trial in Germany – Dr Eugen Mengel 

In addition there were separate discussions about the International NPD Registry and understanding clinical endpoints.  Most importantly there was time for patients and families to meet and exchange in a warm and supportive atmosphere.  During the meeting there was also a child/patient support programme .

The meeting was a mixture of opportunities to meet families, clinicians, scientists, researchers and trial organisers.  This was a very successful and enjoyable way of reducing isolation, increasing understanding and facilitating progress. Congratulations to all involved.

Join the Registry

Calling all patients and carers! We've created a global registry of all NPD patients - if you're not enrolled yet, join us now...

Think Again. Think NP-C

Join our international campaign to improve diagnosis of NP-C!