What are rare diseases?
A rare disease affects a small number of people compared with the general population. Each is rare on its own, but together they touch millions of lives worldwide.
Source: Nguengang Wakap et al., European Journal of Human Genetics (2020); EURORDIS.
When is a disease rare?
In Europe a disease is rare if it affects fewer than 1 in 2,000 people; in the United States, fewer than 200,000 people. Many are chronic and affect more than one body system.
Signs worth attention
Multiple symptoms no common diagnosis explains · growth or developmental delay · a similar family history or parental consanguinity · no response to usual treatment.
What to do if you suspect a rare disease
Keep a record of symptoms and dates and all reports and tests, ask your doctor for a referral to a specialist or to medical genetics, and contact us so we can help you reach the right specialist.
The diagnostic journey
Reaching a correct diagnosis can take years, through many doctors and tests. You are not alone on this journey — ORDA connects you with people who have been through it and with those who can help.
Conditions we work with
Brief introductions — not a substitute for a specialist’s advice.
Systemic sclerosis (scleroderma)Rheumatology
A chronic autoimmune disease that causes fibrosis and hardening of the skin, and may affect internal organs such as the lungs, kidneys, digestive tract and blood vessels.
Interstitial pulmonary fibrosisPulmonology
A group of diseases affecting the lung interstitium, causing scarring (fibrosis) that reduces the lungs’ ability to transfer oxygen; symptoms include shortness of breath and a dry cough.
Can’t find the condition you are looking for? Contact us and we will help you reach a specialist
Rare Disease Day
Every year on the last day of February, the world marks Rare Disease Day to raise awareness of rare diseases and their impact on patients and families. ORDA marks it in Jordan with awareness events.
Our upcoming events