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Together We Can Make A Difference
For Those Affected By Sarcomas!


Board of Directors

There is no translation available.

It’s with great sadness that we have to announce the passing of our dear friend, colleague in the SPAEN Board of Directors and a great patient advocate Dr. Nikhil Guhagarkar.

Nikhil NachrufNikhil joined the patient organization “Friends of Max”, supporting arm of the Max Foundation in India, in 2013. Since then he has worked selflessly to support GIST patients and to raise awareness for this rare disease in India. Nikhil joined the international GIST and sarcoma community for the first time in 2014. He quickly became a valued member, advocate, but most of all a dear friend to the community.

In 2016, Nikhil was elected into the Board of Directors of SPAEN as the first-ever Board Member from outside of Europe and was re-elected in 2020. His work, his dedication, his opinions and perspectives were highly appreciated by the Board as well as the community.

With the passing of Nikhil, the community loses not only a great and devoted patient advocate, but also a kind and caring person and most of all a close friend!

Our thoughts and prayers go out to his wife and son, to his family and friends.
May he rest in peace.



Markus Wartenberg
2013 - 2022
Das Lebenshaus e.V.
Gerard van Oortmerssen
Interim Chair
The Netherlands
2020 - 2024
Patientenplatform Sarcomen
Kai Pilgermann
Financial Director
2014 - 2022
Das Lebenshaus e.V.
Christina Baumgarten
2013 - 2022
SOS Desmoid
Nikhil Guhagarkar
† 26.06.2020
Friends of Max India
 Deck 03 04 02 18 SPAEN Mailand 656 Annika Laakso
2018 - 2022
Association of Cancer Patients in Finland/Suomen Syöpäpotilaat

Appointed board members

Roger Wilson, Honorary President
Sarcoma UK
Deck 2016 SPAEN 725 Estelle Lecointe-Artzner
Honorary President
Info Sarcomes
photo RD website Richard Davidson
Sarcoma UK
Deck 03 04 02 18 SPAEN Mailand 643

Sami Sandakly (patient)
Info Sarcomes

Jesica Garcia (patient)
Bernd Kasper

Professor Dr. Bernd Kasper
Mannheim, Germany

Chair-elect of the EORTC Soft Tissue and Bone Sarcoma Group


The “SPAEN Board of Directors” is a voluntary body of elected members who jointly run the organization with the support of a half-time professional, different freelancers and two elected financial auditors. Board members are elected by the Annual General Assembly for the duration of 4 years.


In the office:

Deck 2016 SPAEN 729

Michaela Geissler

Project Management & Administration

عنوان البريد الإلكتروني هذا محمي من روبوتات السبام. يجب عليك تفعيل الجافاسكربت لرؤيته.

Deck 2016 SPAEN 519

Kathrin Schuster,

Communications & Project Management

عنوان البريد الإلكتروني هذا محمي من روبوتات السبام. يجب عليك تفعيل الجافاسكربت لرؤيته.



Photos: Uli Deck/ARTIS