Health Days 2012
Rare Disease Day
Introduction

A disease is defined as rare when it affects less than 1 per 2000 persons. It is estimated there are about 6000 to 8000 rare diseases, affecting some 350 million patients around the world. About 75% of these patients are children, out of which 30% die before their fifth birthday. Rare diseases are characterized by a wide range of diversified disorders and symptoms, varying not only from one disease to another, but also from one patient to another, albeit suffering from the same disease. It is for this reason that rare diseases are generally considered a heavy burden upon the shoulders of societies.
 
Under the theme: “Rare, but Strong Together”, the World Rare Disease Day is celebrated every year at the end of February. It basically aims to raise health awareness of patients, their families, all society members and decision makers  with regard to the most severe rere diseases affecting society, their effect upon patients' lives, and how to combat them.
 
Internationally Approved Date: 29/2/2012
Locally Approved Date: 7/4/1433 H
 
Theme
(Rare, but Strong Together)
 
The World Rare Disease Day underscores the importance of cooperation and solidarity between rare disease patients and the whole society, in addition to encouraging medical support and research in the field of rare diseases.
 
Targeted Groups
  • Rare disease patients and their families.
  • Health decision makers.
  • Health researchers and professionals.
  • Concerned health associations and organizations. 
  • The whole society.
 
Objectives and General Message
 
  • Advocating the right to obtain the right diagnosis (through genetic testing and examining newly-born infants.)
  • Making every effort to provide the necessary information, concerning coding, classification, and telemedicine.
  • Developing scientific information (for example, medical records and databases, training of professionals, as well as various international publications centered on clinical research, drug development and diagnostics.)
  • Working to alleviate the social burden of rare diseases, by providing specialized social services intended to improve patients' quality of life. Such services include receiving and answering patients through telephone, temporary alternative healthcare services and therapeutic recreation programs. 
  • Paying close attention to the provision and quality of healthcare services provided to patients, by using a global referential network of centers of expertise, and providing multi-disciplinary healthcare.
  • Improving access to the medical services and medicines unavailable for patients, through health care reform, as well as supporting pricing and payment of medicines. 
  • Overcoming patients' seclusion, and enabling them to participate in building society.
Such lofty objectives could not be accomplished without complete solidarity between patients, the society and the whole world.
 
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