GSI Endorses Bad Nauheim Declaration for GIST Patients’ Right to Access Treatment

Representatives from twenty three GIST patient advocacy organizations worldwide gathered in conference June 29 -July 1, 2007 in Bad Nauheim, Germany. They drafted and signed an international declaration to promote the access to state-of-the-art GIST treatment and care for all GIST patients, wherever they may live.

The Bad Nauheim Declaration identifies a set of basic standards for doctors, other health care practitioners, hospital administrators and health care funders to adopt and to build upon for the benefit of the GIST patients they serve. Specifically, the Bad Nauheim Declaration advocates the rights of all GIST patients to receive treatments that meet the standards outlined by international consensus guidelines for the treatment of GIST, such as those drafted by the NCCN or EMSO based on evidence-based scientific criteria.

The goal of the coalition of GIST patient advocacy organizations is that no patient worldwide shall suffer through failure to treat, or through stopping the treatment regimens recommended by GIST specialist doctors and researchers. The GIST patient advocacy groups will monitor the implementation of this declaration and publicize the healthcare systems demonstrating adherence to it. GIST patients from around the world are invited to download and to distribute the Bad Nauheim document for their own advocacy purposes. Click the bulleted items below for the declaration and for the two GIST treatment consensus documents it refers to.

• Bad Nauheim Declaration
• NCCN Clinical Practice Guidelines: Soft Tissue Sarcoma
• Consensus meeting for the management of gastrointestinal stromal tumors. Report of the GIST Consensus Conference of 20-21 March 2004, under the auspices of ESMO.

GIST Support International wishes to hear from GIST patients worldwide about their experiences receiving treatments, and particularly if access to state-of-the-art GIST treatments was not available to the patient. Please contact us at:

GIST Support International
gsi@gistsupport.org
Att: Marina Symcox, PhD
12 Bomaca Drive
Doylestown, PA 18901
(215) 340-9774

If your GIST group is interested in joining the worldwide coalition of GIST advocacy organizations, please contact:

Global GIST Network
globalgistnet@lebenshauspost.org
Das Lebenshaus — Selbsthilfe GIST
Att. Mr. Markus Wartenberg
Frankfurter Strasse 16
D-61203 Reichelsheim / Germany
or via Telefax — to:
Fax: 0049-6035-189616