Rare diseases european study results (2008)

A total of 5995 responses were received from 22 countries for 16 diseases, thanks to the active involvement of 135 patient organisations.

Each cell in the table indicates the number of patients that responded for a particular disease from a particular country. The total for each disease (last row) or the total for each country (last column) are also provided.
In order to facilitate comparisons between the different situations, all results are expressed as percentages.  This form of presentation must be interpreted with care.
In the situation where the number of responses is low, the percentages reflect the sampled group more than the global population. Therefore it is not advised to make generalisations in the interpretation of such data.
Nevertheless, each value represents a valuable contribution to the description of larger populations; by country or by disease.
Strengthening the voices of rare disease patients is the purpose of Eurordis, by uniting patient organisations across Europe. Similarly, by pooling data and increasing the sample sizes, the accuracy of values is increased.
Therefore, in the case of small sample sizes, due to very rare diseases or small country populations, preferentially use the collective total, by country or by disease.

Please note all results are presented in English and the questionnaire in the native language is attached to the results sheets.