ABOUT THE ACTION

The action was initiated as an innovative approach to marking Rare Disease Day, which takes place on the last day of February each year.

Rare Disease Day is organized by European organization for Rare Diseases and their member associations since 2008. Even though the Rare Disease Day campaign started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009, and participation in 87 countries around the world in 2015.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

In 2016., Croatian Alliance for Rare Diseases, in cooperation with the National Organization for Rare Diseases of Serbia, decided to try something different and applied to break the Guinness Record in the category of the largest online photo album of hugs. To break the record the Alliances needed to gather more than 108,121 photos during the period from 21st to 27th of February 2016. Even though the Guinness record was not broken, the goal of the campaign was achieved and awareness about rare diseases was raised.

Based on the success of the previous „Hug for Rare“ campaigns Alliances decided to continue with „Hug for Rare“ concept every year.

The main purpose of the action is to encourage as many people as possible to demonstrate their humanity, warmth and empathy for people living with rare diseases by hugging and sending kind words and wishes. They are often isolated, stigmatized, vulnerable and excluded due to lack of understanding from the society, and this needs to be changed.