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Latest news from NHS England

Have your say on specialised commissioning NHS Englands consultation about how it will prioritise which specialised services and treatments it will invest in is open until 27 April 2015.

This framework will decide which treatments and services for rare disease patients will be commissioned by NHS England and available on the NHS. You can read more about the consultation and find details of how to respond on the NHS England website here →.

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2019 the European Year for Rare Diseases!

Each year since 1983, the EU has chosen a specific topic for the European Year in order to encourage debate and dialogue within and between European countries. By acting together, we aim to make 2019 the European Year for Rare Diseases!

Following the enthusiastic adoption of the official Call for a European Year for Rare Diseases (EYRD2019) at the EURORDIS General Assembly in May 2013, we are preparing to launch the campaign.

Why 2019?

2019 is an important year for the European rare disease movement. It marks the twenty-year anniversary of the adoption of the EU Regulation on Orphan Medicinal Products as well as the ten-year anniversary of the Council Recommendation on rare diseases. What better way to celebrate these major milestones than with a European Year for Rare Diseases!

We invite you to generate support from members and friends of the rare disease community for the launch of this campaign, including your own organisation members, national policy makers, research institutions, academics, scientists, healthcare professionals, centres of expertise, pharmaceutical and biotech companies, medical device manufacturers, investors, media, and the general public at large.

In order to help us build the necessary momentum, we have developed information and tools to help you create energy and excitement around the movement. We urge you to disseminate the following information tools and documents via your websites and social media channels:

  • Official Call for a European Year for Rare Diseases (in English, French, German, Spanish, Italian, Portuguese
  • Questions & Answers document (English only)
  • Campaign logo
  • Information flyer (English only
  • Template letter to be personalised by your association and sent to your national policy makers (English only)

Follow this link →

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