The Rare Disease Association aims to improve the patients life that are with a rare disease ,through the protection, sufficiency for research and development for medicine, creating shortcuts for the relation between patients and institutions .
A disease is considered rare by the European Union when it affects less than 1 person in 2,000. Rare diseases are often chronic and debilitating in some cases of danger to life. Each rare disease has a low prevalence. They have been identified over 6,000 rare diseases, which will affect approximately 30 million in the European Union.
There is a lack of knowledge, diagnosis and treatment for rare diseases. Dedicated funding research for rare diseases is limited.
Research and development of healthcare infrastructure in the field of rare diseases requires long-term projects and therefore it is necessary an appropriate financial help to ensure their sustainability for the long term.
The Rare Disease Association actively do research on rare diseases and have special documentation that will specify community expectations for specific diseases.
Rare Disease Association participates as a partner in a number of specific projects in research.
PROVIDING OPPORTUNITIES FOR PATIENT AND TRAINING
Training programs are designed to strengthen the capacity of representatives of patients with rare diseases. It provides training to empower patients representative for effectively protecting rare diseases at the local level.