Different infrastructures and organisational arrangements are required in each country to address the healthcare needs of its rare disease population in an effective way. Whether a single rare disease affects thousands or only a handful of individuals, they all share similar challenges to get a timely diagnosis, face the same barriers to access highly specialized care and treatment options, and need to deal with a substantial psychosocial burden.

The health of people living with a rare disease should not be left to luck or chance especially amidst the COVID-19 pandemic. Planning ahead requires all stakeholders to acknowledge their individual responsibility to build a successful pathway from diagnosis to access and at the same time, commit to working together in a much more agile and coordinated way than what we have seen so far. If we fail to do so, we will have failed the 30 million people living with a rare disease in Europe.

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