Eurordis: Rare Barometer Survey Results

Eurordis have completed a Rare Barometer survey to find out about rare diseases patients’ opinions on the future of rare diseases.

They received almost 4,000 responses in 23 languages and across 70 countries worldwide, meaning that they can be sure that the results are robust and credible.

The key results from participants showed that:

    • Most people living with rare diseases (79%) do not expect to be cured from their rare disease within the next 10 years, but consider it possible to improve their quality of life by accessing integrated health care and social care.
    • People living with rare diseases prefer to be treated locally but 81% of them are willing to use remote consultations to access multidisciplinary health care more easily, and 85% of them are ready to travel to another country to receive medical treatment for their rare disease.
    • 95% of people living with rare diseases support newborn screening for rare conditions.
    • 94% of patient representatives are willing to be involved in research for rare diseases as official partners or co-investigators.

You can find a factsheet summarising key findings by clicking here and you can read the full report by clicking here.

Alex TLC are involved in European wide efforts to improve outcomes for rare disease patients. We want to ensure newborn screening is available for rare conditions which is why we have been petitioning for ALD to be added to the newborn screening programme. If you haven’t already signed our petition, then please follow the link below and remember to share with friends and family: Fund adrenoleukodystrophy (ALD) screening for children at birth. – Petitions (
Alex - The Leukodystrophy Charity