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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