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

New Horizons GIST 2020 - GOES virtual

There is no translation available.

The corona virus has dramatically changed our private lives and our lives as Patient Advocates worldwide. So, also NEW HORIZONS GIST 2020 will be held virtually!

 
“Leaders” of your national “GIST-Patient Organization” are invited to the VIRTUAL NEW HORIZONS GIST Conference 2020, which will be held virtually but in live/real time as a half day program from September 10 – 12. The timing depends on your regional time zone.For example: If the meeting starts at 8:00 a.m. in New Jersey, it is 13:00 p.m. in London, 14:00 p.m. in Western Europe and 17:30 p.m. in India.

As many of you have already experienced: NEW HORIZONS GIST is a great opportunity where “GIST Patient Advocates / GIST Patient Group Leaders” from around the world are coming together - this time virtually!

Due to the high travel costs, only 40 - 50 participants could come together in previous years.

This year - virtually - there are no limits! Each organization is welcome to register several representatives! Only requirement: Participants must be able to communicate in English.

This is how we can take an advantage of the restriction in 2020:
Namely: To run the largest global meeting of “GIST-Patient Advocates” ever!

So please share this invitation with other Board Members or Leaders of your organization.

Many international - LEADING GIST-Experts will provide insights into GIST basics including diagnosis, treatment, care and research issues as well as more in-depth knowledge and latest developments and most pressing questions.

We also plan to have special "Patient Advocacy Sessions" (Capacity Building) for GIST and Sarcoma Patient Advocates later in this year. Three special online-sessions are planned for October, November and December 2020. More information will follow, but you can see the planned topics in the attached program already.

Please find her the pdf preliminary program for NEW HORIZONS GIST 2020 (792 KB)

If you would like to participate at NEW HORIZONS GIST 2020 please register via the following link: https://forms.gle/iM3cu7SFFisVKFwCA

After your registration you will receive the Zoom link and a passcode to participate at the virtual meeting around beginning of September.

If you have any questions, please e-mail to Esta dirección de correo electrónico está siendo protegida contra los robots de spam. Necesita tener JavaScript habilitado para poder verlo.

Special Projects

There is no translation available.

SPAEN brings its objectives to life - primarily the improvement of diagnosis, treatment and care for sarcoma patients – in different special projects with varying focus.

New Horizons GIST

For several years now, NEW HORIZONS GIST is the most important global annual conference for GIST patient advocates. At NEW HORIZONS GIST, patients from the global GIST patient community come together, can interact with top GIST experts, have access to state‐of‐the‐art medical and scientific information and can exchange best practice in patient advocacy among each other. The conference is a balanced symbiosis of medical content, advocacy topics and capacity building sessions. It is held every year and organised by either American Groups (The Life Raft Group/Alianza GIST) or European Groups in cooperation with SPAEN.

NEW HORIZONS GIST 2018 was held in Vienna, Austria, in September 2018

 

NEW HORIZONS GIST 2017 was held in Wayne, New Jersey, USA from October 1-3, 2017.

NEW HORIZONS GIST 2016 was held in Sitges/Barcelona, Spain from May 18-21, 2016.

 

Roundtables on specific topics

In close collaboration with expert patients and the SPAEN scientific board, SPAEN identifies specific topics and brings the key players together to discuss and form a common statement or publication to address the topic and spread knowledge.
Recent roundtables were:

  • Roundtable on Desmoids – outcome: Update of Desmoid Consensus Paper – published in "Annals of Oncology"
    February 23, 2017 in Frankfurt, Germany
  • Roundtable/Exchange in Generic Imatinib with CML Community and PD Dr. Peter Reichardt
    July 15, 2015 in Munich, Germany

  • Roundtable on Desmoids – outcome: Desmoid Consensus Paper – published by the European Journal of Cancer
    May 8, 2014 in Frankfurt, Germany

  • Roundtable on Pediatric and Wild-Type GIST
    October 22, 2013 in London, UK

 


Mentoring and support

SPAEN supports individuals or groups of patients who plan to found a national patient organisation by giving advice and – if possible and necessary – accompanying them on their way for some time. This way, Swiss sarcoma patients founded a patient organisation “Swiss Sarcoma”. After two “Swiss Sarcoma Patient Days (April 2014 and April 2015), the official group was brought to life .

Furthermore, SPANDAN, an Indian Sarcoma Patient Group, was founded in February 2015 after approx. one year of planning, supported by SPAEN .

 

Voices of Courage and Hope

SPAEN currently plans to create and publish a book of individual patient stories from different countries around the world – the “Voices of Courage and Hope”. The aim of the book is to illustrate how sharing patient experiences and being part of a patient group can help improve the lives of sarcoma patients no matter where they live. By collecting and sharing those stories, SPAEN intends to inspire other patients to join their local patient group for support and information and to demonstrate how empowering it is to be part of the sarcoma patient community.
More to come!