Eurordis - Rare Disease Europe

Download the report

Only a very small number of rare diseases have curative treatment, but what is the level of access for existing rare disease treatments, either symptomatic or disease-modifying? Does it really differ from the general population? 1350 Rare Barometer participants told us about their access to treatments, and over a period of 12 months:

• 24% of them did not get the medical treatment they needed over the last 12 months because the treatment was not available in their country (they were 7% in the general population).
• 15% did not access the medical treatment they needed because they were not able to pay for it (they were 6% in the general population).
• 19% were prevented from accessing the treatment they needed because the waiting list was too long (they were 9% in the general population).