#30MillionReasons for Europe to Take Action on Rare Diseases

That’s why EURORDIS is uniting the voices of the rare disease community across Europe to spotlight the issue for policymakers. The organisation has launched a new campaign for an EU Rare Disease 2030 Action Plan, working on a collective European strategy to ensure that scientific, technological, and therapeutic advances reach each and every person living with a rare disease in Europe.

The action plan is working to address three important barriers in the rare disease community:

1. A high level of unmet needs. Rare diseases have a significant impact on the lives of patients and families and are often debilitating or lead to premature death. Yet patients typically face an average of five years until reaching a diagnosis. Even then, only 6% of rare diseases have a treatment. The 2030 action plan envisions the introduction of 1,000 new therapies and aims to bring the average diagnosis time of five years down to six months.

2. Outdated rare disease strategies. Progress continues at the national policy level with the establishment of National Plans and Strategies. Many of these plans, however, have expired or not been properly implemented. They are not keeping up with recent advancements in science and technology, like new-born screening and advanced therapies.

3. A siloed approach. A renewed focus needs to be placed on rare diseases at the European level. Due to the overlapping nature of rare diseases, the work that happens in this area needs to be collaborative. For rare disease patients and their families in Europe to have the best possible treatment and outcomes, the work and research can no longer be siloed.

An action plan at the European level could improve the lives of rare disease patients across the continent. In particular, EURODIS’ plan could further three basic goals: to stop people from losing their lives too young from rare diseases, to improve the quality of life of people living with a rare disease, and to ensure that Europe is a global leader in rare disease innovation.

Take action by asking policymakers to support the call for a European Action Plan on rare diseases or visit EURORDIS to learn more.