SPAEN 2011 in Berlin

2nd SPAEN Annual Conference 2011

2nd SPAEN Conference 2011 held at 17. – 19. November 2011 in Berlin (Germany)

Nearly 100 participants who attended the 2nd SPAEN Annual Conference for organizations representing patients with Sarcomas incl. GIST or Desmoid-Tumours held in Berlin, documented the increasing interest in the disease group of Sarcomas, which is in many European countries a ‘forgotten cancer’, because it is one of the rarest forms of cancer. Among the participants were more than 55 representatives from Sarcoma Patient Advocacy Groups from 14 countries, several European Sarcoma Experts and industry representatives. The meeting focused on research and treatment for Sarcomas and advocacy/capacity building for Sarcoma Patient Groups. The main aims of the conference were supporting patient advocates to develop new knowledge and skills about the diagnosis and treatment of Sarcomas and discussing and sharing best practice to enhance their daily work as patient advocates.

Among the topics of the 2nd SPAEN Conference were:

  • Understanding the results in clinical trials, aspects of Quality of Life, Managing life with and after cancer
  • Ask the expert session about "Understanding Sarcomas" with leading European Sarcoma Experts
  • Parallel Sessions on GIST (Therapy Management and Compliance, Paediatric GIST, New Treatment Options), Sarcomas (Management of Advances Sarcomas, New agents and clinical trials) and Desmoids (Molecular Genetics, Treatment Options)
  • Round Table Discussions and Sharing Best Practice Examples of Advocacy work

The Conference gave Patient Advocates also the opportunity to share best practice examples and to network across borders.




Statement from Hans Keulen, European Liaison of the US-based Chordoma Foundation and a Chordoma patient himself about the SPAEN conference: "It is a strange experience to see so many people with a life threatening disease interact so strong with physicians, scientists and representatives of pharma. Not for their own benefit, but for the benefit of other patients and especially for the next generation of patients. The SPAEN conference illustrates that the best way for small patient organizations of rare cancers to get their voices heard by scientists, physicians and industry is to unite at the highest possible level: Europe. That is exactly what SPAEN is trying to do and what is proving to be increasingly effective."

See here a collection of statements from SPAEN Conference participants.

Further information

Conference programme of the SPAEN Conference 2011

Conference Book (with Who is Who etc.)

Presentations can be found in the Download Area

Pictures of the conference can be found in the Photogallery


Member LogIn