For Patients
Living with sarcoidosis or interstitial lung disease (ILD) can be challenging, both physically and emotionally. Connecting with others who share similar experiences can provide valuable support, practical advice, and a sense of community. Patient organizations play a crucial role in offering reliable information, advocacy, and opportunities to connect—both locally and globally. On this page, you will find an overview of patient associations worldwide, helping you find support, share experiences, and stay informed.
WASOG works closely with several patient societies and patient representatives are always included in both research collaborations and education.

Recommended websites
Patient societies for sarcoidosis
- Österreichischerr SarkoidoseVereinigung (OSV)
- Vereniging voor sarcoïdosepatiënten (BVS) - Belgium
- Immun Defekt Foreningen - Denmark
- EKL – Estonian Lung Association - Estonia
- Deutsche Sarkoidose-Vereinigung (DSV) - Germany
- Amici contro la Sarcoidosi Italia ONLUS (ACSI) - Italy
- Sarcoïdose Belangenvereniging Nederland (SBN) - Netherlands
- Norsk Sarkoidose Forening - Norway
- Liga Portuguesa Contra as Doenças Reumáticas (LPCDR) - Portugal
- Schweizerische Sarkoidose-Vereinigung (SSARV) - Switzerland
- Foundation for Sarcoidosis Research - United States of America
- Sarcoid Networking Association (SNA) - United States of America
- Sarcoidosis Research Institute - United States of America
Patient societies for interstitial lung diseases (including fibrosis)
- Belgische Vereninging voor Longfibrose v.z.w.
- Lungenfibrose.de, hilfe & informationen für betroffene - Germany
- Irish Lung Fibrosis Association - Ireland
- Belangenvereniging Longfibrosepatiënten Nederland – Netherlands
- Pulmonary Fibrosis Foundation - United States of America
- Coalition for Pulmonary Fibrosis - United States of America
- Stichting LAM - Netherlands
- Histiocytose Nederland - Netherlands
- Lymphangioleiomyomatosis (LAM) foundation - United States of America
- StopCAIDnow Inc. – Stop Childhood autoinflammatory disease - United States of America