In the World

When approaches to the issue in the World has also been investigated, studies in rare diseases field have first started with Orphan Drug Act in United States of America going in effect in 1983 and rules regarding the encouragement of studies in rare diseases field were formed. Then, Japan in 1993 and Australia in 1996 developed implementations regarding the issue.


A similar implementation in Europe has started with “Orphan Drug Regulation (EC 141/2000)” in the member countries embraced by European Commission in 1999 and encouragements regarding rare diseases and orphan drugs research were implemented.


Last day of February each year is celebrated as “Rare Diseases Day” in the whole world to draw attention to existence of rare diseases and to create awareness in the society and health sector on an international scale. 



In Turkey

Turkey is one of the countries where rare diseases are observed more commonly. One of the biggest reasons of this is the high amount of consanguineous marriages and increased risk of occurrence of genetic disorders. It is estimated that nearly 20% of the marriages in Turkey are consanguineous marriages. It is thought that about 6 to 7 million individuals across the country have rare diseases.


Since rare diseases are seen as diseases our country will need to combat against in the long term, similar regulations that exist in the World need to be employed by our country as well. Conducting studies regarding these diseases and orphan drugs to be used in their treatment and developing strategies for this topic is only possible with creation of platforms in which the sector shareholders and specialists can conduct studies and express themselves.