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Table 1 Examples of ILD organizations and groups with social media content for patients

From: The opportunities and challenges of social media in interstitial lung disease: a viewpoint

Organization/group Social media platforms Description
ILD specific organizations / groups
Action for Pulmonary Fibrosis Twitter (@ActionPFcharity) Patient-led charity that provides education, support, and research funding
Breathe support Facebook Online network and support groups created by ILD patients and caregivers
Canadian Pulmonary Fibrosis Foundation Facebook, Twitter (@THE_CPFF) Canadian non-profit organization that provides education, support, and research funding
European IPF and Related Disorders Federation Facebook, Twitter (@EU_IPFF), LinkedIn Non-profit organization that unites 21 national ILD patient associations across Europe
PF Warriors Facebook International patient-led support group for ILD patients and caregivers
Pulmonary Fibrosis Foundation Facebook, Twitter (@pfforg), Instagram (@pfforg), YouTube American non-profit organization that provides education, support, and research funding
Pulmonary Fibrosis News Twitter (@pulmonaryfibros), Instagram (@pulmonaryfibrosisnews) Media company focused on reporting ILD-related news and research
General respiratory organizations / groups
American Lung Association Facebook, Twitter (@LungAssociation), Instagram (@lungassociation), YouTube, LinkedIn, TikTok (@americanlungassociation) American non-profit organization providing respiratory-related education, support, advocacy, and research funding
British Lung Foundation Facebook, Twitter (@lunguk), Instagram (@britishlungfoundation), YouTube UK-based charity providing respiratory-related education, support, advocacy, and research funding
European Lung Foundation Facebook, Twitter (@EuropeanLung), Instagram (@european_lung), YouTube, LinkedIn European patient-led non-profit organization which provides respiratory-related education, support, advocacy, and research funding