Menu Search
Tell us your story

Top 10

Patient advisory group at ERS Congress Amsterdam

Top 10 priorities for LAM treatment and care

A multi-lingual survey to identify the most important priorities for people affected by LAM was developed by ELF and the European LAM Federation.  A total of 29 priority statements were ranked by survey respondents and the following were identified as the top 10:

  1. Improving methods of identifying patients with active disease

  2. Availability of drugs for LAM in all EU countries

  3. All patients can access a specialist LAM centre

  4. Lung transplants should be available to more patients, and with shorter waiting times

  5. Improving non-invasive diagnosis

  6. Patients can access treatments such as low dose sirolimus/everolimus

  7. Improving care for patients in non-specialist hospitals/services

  8. Opportunity for patients to hear about and participate in clinical trials

  9. Improving diagnostic biomarkers so that diagnosis is faster and more definitive

  10. Development of a European-wide organ donor service 

Read more about the these priorities in our article published in ERJ Open Research (April 2016)