28/02/2026
Today is rare disease day!
๐จ There are over 300 million people who live with a in .
๐ Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.
๐ด Some facts about :
1๏ธโฃ There are more than 6000 identified rare diseases.
2๏ธโฃ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.
3๏ธโฃ 72% of genetic diseases are genetic, although is not one of them.
๐ Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.
4๏ธโฃ ๐ถNeonatal is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.
5๏ธโฃ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.
Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for patients ๐.
Thank you for your support on this !
