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Patient priorities highlights

This year we have been working with two advisory groups to develop patient-led information for lung cancer and lymphangioleiomyomatosis (LAM) as part of our new patient priorities project. 

Highlights of these activities include:

  • Working with enthusiastic, committed individuals to identify patient priorities within lung cancer and LAM treatment and care to raise awareness in Europe.
  • Receiving over 350 questionnaire responses from individuals diagnosed with lung cancer and their carers about what matters most to them.
  • A workshop with lung cancer patients, carers, patient organisation representatives and healthcare professionals at the ERS Congress in Amsterdam which helped formulate ideas for a joint patient-professional statement on lung cancer care in Europe.
  • Producing an article to highlight the top 10 priorities for LAM from analysis of a survey and a multi-stakeholder workshop that took place in September 2014. We hope the article will be published in a European journal in 2016. 
  • The development of two websites designed with the input of both patient advisory groups linking to quality patient information and which will include latest research advances, links to multilingual resources, support and recommendations, including the patients’ priorities.

For more information, contact Jeanette.

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