TIF joins forces with 300 million people around the world for the global observance of Rare Disease Day, coming up on February 28th.
Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges that “rare” persons encounter in their daily lives. It takes place every year on the last day of February (February 28 or February 29 in a leap year) – the rarest date on the calendar – to underscore the nature of rare diseases and the particular challenges that patients face in their daily lives.
As a vulnerable and neglected population, the 300 million people living with a rare disease around the world and their families are disproportionally affected by stigma, discrimination and social marginalization, within their social environment as well as society at large.
There are over 6.000 rare diseases that are chronic, progressive, degenerative, disabling and frequently life threatening. Among them is β-thalassaemia, still considered a rare disease in certain regions of the world such as Europe, despite its being one of the most common autosomal recessive disorders in the world.
Due to the rarity of each individual disease and scattered populations, expertise and information is scarce. In health and support systems designed for common diseases people living with a rare disease face inequities in accessing diagnosis, care, and treatments.
Learn More about the Rare Disease Day 2021 HERE
Download the Rare Disease Day 2021 Promotional Material HERE
TIF Sickle Cell Disease Virtual Event for Patients & Healthcare Professionals
In honour of Rare Disease Day 2021, the Thalassaemia International Federation is organising a Sickle Cell Disease (SCD) Event for Patients and Healthcare Professionals on 25 February 2020, 15:00-17:00 EEST.
The event is open to Greek-speaking participants.
The official Rare Disease Day video shines a light on the global and wide community of 300 million people and over 6000 rare diseases, represented by Angelina, Syafiq, Regina, Tristan, Jon-Kristian and Harvey.