Rare GIST and Patients in Cyprus and Greece

Gastrointestinal stromal tumours—GISTs—belong to a group of cancers known as soft-tissue sarcomas. Sarcomas are less common cancers that develop in connective or supporting tissues and originate in mesenchymal cells found in bone, muscle, fat and cartilage.

By contrast, many more common cancers, including lung, skin and prostate cancer, develop from epithelial cells found in the linings of the body’s surfaces. These cancers are known as carcinomas.

It is estimated that between 3,000 and 5,000 people develop GIST in the United States each year, with comparable rates in other countries. In Cyprus, approximately ten new cases are estimated to be diagnosed annually.

GIST was once regarded as a single disease. It is now divided into several forms according to the specific mutations, or genetic changes, present in the cancer cells. Most forms affect adults, although some affect children and a small number are hereditary.

Understanding GIST can be challenging. Whatever type of GIST a person has, learning as much as possible about the disease is important. As patient advocates say, “the wonder drug of the 21st century is the informed patient”.

CØNNEKT Communication Consultants works with the international patient organisation The Life Raft Group to help people living with GIST and their relatives connect with specialists and patient organisations experienced in this rare disease.

Because rare diseases affect relatively small populations, health systems, pharmaceutical companies and research centres may struggle to devote sufficient resources to them. For approximately two decades, The Life Raft Group has worked to bring together funding, knowledge and experience to support people affected by GIST.

Greek-speaking patients can contact gistcyprus@gmail.com for information and to connect with others. Further information is available on our We Care—GIST page.

George Constantinou
Communication Consultant
CØNNEKT Communication Consultants