My name is Juliana Popova and I’m the chairperson of the Bulgarian support group for people with GIST – “GIST Alliance for Patients-Bulgaria”.
Our organization was founded in January 2012. All patients can contact us by e-mail at firstname.lastname@example.org or by phone at: +359 888 585 366; +359 889 242 228. We have already done some activities, such as creating a website, www.gist-bg.com/, making some leaflets with useful information, providing psychological support for people with GIST and assisting them in obtaining the appropriate treatment.
In June 2012, the first national meeting of GIST patients in Bulgaria was held in Sofia. In December, we started a training seminar about different conditions in our treatment.
The number of GIST patients on treatment is constantly increasing, and now there are more than 80. There is no clinical register for GIST patients in Bulgaria, so my information may not be exact.
Our organization is a member of SPAEN (www.sarcoma-patients.eu/) and we attended the SPAEN Annual Conference in November 2012, when we presented GIST Alliance for Patients –Bulgaria. Also received an invitation to attend the New Horizon GIST Conference in Miami this year.
At present, I’m trying to reach more GISTers (I’m in touch with about 40), to continue with the training seminars, and to help establish a center for GIST treatment. The local problems in Bulgaria are quite different. For example, here the Gleevec patent has expired and the first generic imatinib is coming.