Information portal on very rare haemato-oncological malignancies
 

Introduction

Welcome to the internet information portal developed under a grant program National Plans and Strategies of the Ministry of Health of the Czech Republic. This website is dedicated to very rare hematologic and oncologic diseases which can be defined based on their prevalence not surpassing 1 per 100,000 citizens.

Due to the pronounced rarity of the disorders, no standard recommended therapy with registered drugs has been established in most cases so far. However, it would be unethical to discriminate these patients and deny their rights to receive modern treatment with effective medications.

At the Department of Internal Medicine, Hematology and Oncology of the University Hospital Brno we have been systematically addressing the issues of very rare diseases. We believe that this pilot project will raise awareness among the general public and health professionals and enables formation of a network of cooperating institutions and experts to achieve optimal health care delivery to these patients.