With the idea of raising awareness for people living with a rare disease, an official video marking the World Rare Disease Day-2022 falling on February 28 was globally launched on January 31.
The awareness campaign is jointly supported by 67 National Alliance patient organisations from across 59 countries including the Indian Organisation for Rare Diseases (IORD) from India.
The animated video has been subtitled in 40 global languages to spread awareness about people living with a rare disease across the world. They include three Indian languages Hindi, Telugu & Bengali apart from English.
The three-minute awareness video features some inspiring stories of Rare Disease survivors, the challenges they faced in diagnosing their rare condition and how they overcame those hardships.
In particular, this year’s campaign video features the inspiring stories of five superheroes from five different regions of the world: Wafic, Jelena, Vasco, Nada, and Tshepiso.
These Rare Disease Day superheroes represent the diversity of the community across diseases, regions, cultures, and at the same time, the similarity of the barriers, struggles and helplessness that people living with a rare disease and their families have to confront.
- Wafic is born in Lebanon. He has been diagnosed with Duchenne Muscular Dystrophy, a rare and incurable genetic disease. Read his story here.
- Jelena is from Serbia. She has been diagnosed with Cystic Fibrosis. Read her story here.
- 6-year-old Vasco is from Peru. He loves to play, paint, dance and read. Read his story here
- 22-year-old Nada is from Egypt. She has been diagnosed with Epidermolysis Bullosa, which makes it difficult for her to move, read and swallow. She is a proud graduate of Alexandria University in Egypt. Read her story here.
- Tshepiso Gloria is from Zimbabwe. She has been coping with a rare bleeding disorder called Von Willebrand’s Disease. Read her story here.
