Top 10 priorities from the lymphangioleiomyomatosis (LAM) survey

 1) Improving methods of identifying patients with active disease81%
 2) Availability of drugs for LAM in all EU countries81%
 3) All patients can access a specialist LAM centre81%
 4) Lung transplants should be available to more patients and with shorter waiting times79%
 5) Improving noninvasive diagnosis78%
 6) Patients can access treatments such as low-dose sirolimus/everolimus77%
 7) Improving care for patients in nonspecialist hospitals/services77%
 8) Opportunity for patients to hear about and participate in clinical trials75%
 9) Improving diagnostic biomarkers so that diagnosis is faster and more definitive75%
10) Development of a European-wide organ donor service73%
  • Priorities are listed in descending order of importance. EU: European Union.