The following activities helped us to identify what matters most to patients and caregivers in LAM treatment and care.

• 1 Reviewed research

  A patient-centred review of published medical research and organisational literature about lymphangioleiomyomatosis (LAM) formed the basis for evidence-based planning discussions and consultation throughout the project.

• 2 Consulted in Europe

  We consulted with 572 individuals through:

  • Online survey
    A multilingual online survey was developed by the European LAM Federation and European Lung Foundation based around a set of priority topics identified through experience of working with LAM groups and LAM patient experts in the field. The survey covered five key areas in connection with LAM: diagnosis, treatment, care, living with LAM, research.
    
  • Priority-setting workshop
    Patients, caregivers and people working in the field (healthcare professionals, researchers and industry representatives) came together at a workshop held at ERS International Congress in Munich, 2014 to discuss the priorities identified by the online survey.

• 3 Set up a patient advisory group

  We brought together women diagnosed with LAM from across Europe to form a patient advisory group to help guide the development of this website and the LAM factsheet and to contribute their experiences and views. View the patient advisory group members in the section below.

• 4 Developed patient led guidance

  We have developed this website to signpost to quality information and support in Europe for individuals who receive a LAM diagnosis and their caregivers.

This project was funded by ERS

The European Respiratory Society (ERS) is an international organisation that brings together physicians, healthcare professionals, scientists and other experts working in respiratory medicine.

ERS is one of the leading medical organisations in the respiratory field, with a growing membership representing over 140 countries worldwide.

Their mission is to promote lung health in order to alleviate suffering from disease and drive for respiratory medicine globally.

This project was managed by ELF

The European Lung Foundation was founded by the European Respiratory Society in 2000.

ELF brings together patients and the public with respiratory professionals to positively influence lung health.

The ELF website provides a wealth of useful resources to share the latest developments in lung health research from ERS and its members. ELF also works to ensure that people with lung diseases and the general public have the opportunity to influence respiratory research and guidelines at a European level.

ELF’s key role can be seen as being the public voice of the ERS and the public’s voice in the ERS.