Information about IPF
Do healthcare providers (e.g. the NHS) suggest websites/information to learn more about IPF? Does your association provide information about IPF to patients? Is information on new therapies made available for patients? Are there any other support groups in your country and, if so, do you collaborate with them and how?
From diagnosis to treatment
What are the problems that patients face during their IPF journey (until they get a diagnosis) in your country? What are the problems that patients face during their IPF journey (until they receive treatment) in your country? What are the conditions to apply for a lung transplant? Is it correct that there is a lung transplantation registry in your country? How is the lung transplantation registry managed? Do treating institutions (hospital, centre of expertise) offer rehabilitation classes for patients with IPF and their carers? Is palliative care included in the treatment for end-of-life IPF patients?
Reimbursement and research
Is pharmacological treatment for IPF reimbursed in your country? Is it entirely reimbursed by health services? Do you know if IPF is a priority on the rare disease agenda in your country? Are there government funds dedicated to IPF research?
Obstacles/opportunities
What are the current issues/barriers in IPF in your country? Which of the above would you consider a priority? What solutions can be adopted to address the current gaps? Are you aware of existing best practices in other countries?
EU IPF Charter
Do you agree that there is a need for an EU IPF Charter? Why? What would be your expectations for an EU IPF Charter (more policy weight, impact on medical guidelines, common voice for IPF, focusing action, etc.)? What are the five key themes that you would like to see in the EU IPF Charter? Are you aware of the existence of the UK Charter on IPF? Do you think that the UK Patient Charter is a good starting point for the European one? Do you think that the endorsement of European policymakers could be an asset? Would you be interested in potentially playing an active role in the development process?
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