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People with rare diseases [What Europe does for you]

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Do you, or someone you know, suffer from a rare disease – that affects fewer than 5 in 10 000 people? Most rare disease patients suffer from even rarer conditions, affecting only 1 person in 100 000 or more. However, as there are over 5 000 rare diseases, the number of people suffering from them is high – it is estimated that 30 million Europeans live with a rare disease.

Most rare diseases are of genetic origin and have no cure. They can be life-threatening, complex and disabling. Often, correct diagnosis and treatment are established late. Medical expertise is scarce and scattered around the EU. This is where European cooperation can help, to pool resources on rare diseases to address these challenges.

The EU provides funding for patients’ organisations that connect patients, families, policy-makers and healthcare professionals. European laws have created incentives for researchers and companies to develop treatments, or what are known as ‘orphan drugs’ for rare diseases. To exchange information and provide support on complex or rare diseases that require highly specialised treatment and a concentration of knowledge and resources, the 2011 EU Directive on Patients’ Rights in Cross-border Healthcare established European Reference Networks of healthcare providers across Europe.

The EU also supports initiatives which foster diagnosis and registration of rare diseases, such as Orphanet and the European Platform on Rare Diseases Registries. Moreover, the EU finances scientific projects on rare diseases through its Horizon 2020 research programme.

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Discussion

One thought on “People with rare diseases [What Europe does for you]

  1. Wonderful article. It’s great to know that EU is doing so much for those suffering from rare diseases. This is something for which the governments of other nations should also collaborate not just to contribute funds but knowledge as well so that cure for these rare diseases can be found.

    Like

    Posted by Robert Klein | April 27, 2018, 12:01

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The content of all documents (and articles) contained in this blog is the sole responsibility of the author and any opinions expressed therein do not necessarily represent the official position of the European Parliament. It is addressed to the Members and staff of the EP for their parliamentary work. Reproduction and translation for non-commercial purposes are authorised, provided the source is acknowledged and the European Parliament is given prior notice and sent a copy. Copyright © European Union, 2014. All rights reserved

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