COMING UP | Share Your Colours For Rare Disease Day 2023
The Thalassaemia International Federation (TIF), advocating globally for the rights of people with thalassaemia, sickle cell disease and rare anaemias, and fighting to ensure equitable access to diagnosis, treatment and quality care for every patient with these disorders across the world, unites its voice with the Rare Disease Day movement and stands in solidarity with more than 300 million people living with a rare condition worldwide.
A Few Words About Rare Diseases and the RDD2023 Campaign
Rare Disease Day (RDD) is the official international awareness-raising campaign for rare diseases which takes place on February 28. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
A disease is defined as ‘rare’ when it affects fewer than 1 in 2,000 people. Over 6,000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease, but also from patient-to-patient suffering from the same disease.
Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients’ quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.
This year, the Rare Disease Day campaign’s focus is equity. Everyone deserves equitable opportunities and access to health care but people living with a rare disease are more likely to experience treatment inequality, misdiagnosis and isolation.
Join the Movement and Share Your Colors!
Once again, the key message for Rare Disease Day 2023 is ‘Share Your Colours!
Organizations and individuals across the world are encouraged to join the RDD2023 movement and dedicated campaign through various activities, build awareness and help make a difference for rare disease patients and families.
