Rare Disease Day
Today we stand with all those who have a rare disease for Rare Disease Day.
Juvenile Idiopathic Arthritis (JIA) as a whole is not an official “rare disease” as it affects around 1 in 1000 children rather than the official rare disease definition of 1 in 2000. However, it is worth remembering that JIA is actually made up of a group of diseases sharing similar characteristics. If we look at each sub-type of JIA in isolation such as Systemic onset JIA (sJIA) or any of the other types of JIA (polyarticular, oligoarticular, enthesitis-related, psoriatic and undifferentiated arthritis), the definition of rare disease would apply to each of those sub-types.
Regardless of the official categorisation, we know that those with JIA face some of the same universal challenges affecting other rare diseases.
Lack of awareness that babies, children and young people can get arthritis leads to delays in diagnosis or misdiagnoses.
Receiving prompt and effective treatment is impacted by the delays in diagnosis.
Families of those affected by JIA often report the social and financial burden of having a long-term condition that many are not aware of.
The variability of living with JIA, which can sometimes be an “invisible illness” can lead to stigma and lack of understanding.
Research needs to be international to ensure that experts, researchers and clinicians are connected – something that we are passionate about to bring us closer to a cure for JIA.
Let’s stand with the 300 million people worldwide who have a rare disease and let the world know that rare diseases matter!
Find out more about #RareDiseaseDay at https://www.rarediseaseday.org/