Resources for patients

The book Understanding Your Body – Idiopathic Pulmonary fibrosis (IPF) explains the disease IPF to patients in an easy-to-understand way. In addition, necessary examinations and treatment options are covered

Providing a useful overview of symptoms, treatment and diagnosis, The British Lung Foundation is a resource for IPF and other lung disease patients

LifewithIPF.com is a website created for IPF patients. It offers disease information, answers to frequently asked questions, patient stories and downloadable resources

 

The Canadian Pulmonary Fibrosis Foundation provides support to patients with IPF and caregivers; raises research funds and awareness of IPF in the general community

EURORDIS is a non-governmental patient-driven pan-European alliance of rare disease patient organisations in 54 countries covering over 4000 diseases

The Irish Lung Fibrosis Association aims to provide resources and support for those impacted by lung fibrosis and to support research and development of new treatments

The National Organization for Rare Disorders (NORD), is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them

Orphanet is a portal for information on rare diseases and orphan drugs. They aim to help improve diagnosis, treatment and care of patients with rare diseases, including IPF

PatientsLikeMe is a free online community where thousands of patients with life-changing conditions share real-world experiences

The Pulmonary Fibrosis Foundation aims to find a cure for IPF and advocates for the pulmonary fibrosis community. The non-profit foundation promotes disease awareness and provides an environment of compassion for patients and their families

The Pulmonary Fibrosis Foundation produces Pulmonary fibrosis patient information guides that are available in English, Dutch, French, German, Italian, Portuguese, Spanish (Spain) and Spanish


Pulmonary Fibrosis UK provides links to useful online resources for those wanting information or support on their pulmonary fibrosis journey

RareConnect is a joint project of EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders), with the aim of connecting individuals and families affected by rare diseases, and allowing them to share vital experiences, and find helpful information and resources

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Luca Richeldi discusses resources for IPF patients.

Luca Richeldi discusses resources for IPF patients.

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Luca Richeldi discusses support groups.

Luca Richeldi discusses support groups.