Covid measures: 83% of rare disease patients’ care was disrupted

"The first weeks of COVID I had fears. Suddenly there was no longer much help or contact. Some operations that should have been done have been postponed. I’m really waiting for that. I’m in a lot of pain right now. In addition, I have the feeling that I am on my own.” A rare disease patient

Health care was disrupted and many patients suffered from uncertainty and fear. However, many rare disease patients reported encourageing experiences in stregthening family ties and with e-health.

Here are the key findings from Rare Disease Europe.