Patient Societies

 

Sarcoidosis

Paula Polite of the Sarcoidosis Research Institute, Memphis, USA, stresses the importance of sarcoidosis patients groups. For several years there has been cooperation between the sarcoidosis patient societies within Europe, as well as between Europe, the USA and Japan. To promote the interest of sarcoidosis patients, delegates of various patient societies have become a member of WASOG and participate in international congresses (Polite PY. Eur Respir Mon 2005;32: 337-39).
 

Australia
Sarcoidosis and Lyme Disease Support Australia
e-mail:  support@sarcoidosisaustralia.com
website: www.sarcoidosisaustralia.com

Austria
Österreichischerr Sarkoidose Vereinigung (OSV)
e-mail:  sarkoidose@gmx.at 
website: none available yet

Belgium
Vereniging voor sarcoïdosepatiënten (BVS)
e-mail:  hilde.santermans@uz.kuleuven.ac.be 
website: www.sarcoidose.be

Europe
European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS )
e-mail: info@sarcoidosis.biz
website: www.sarcoidosis.biz

France
Réseau International de Soutien des Malades de la Sarcoïdose Réseau (RISMS)
e-mail: address : risms@wanadoo.fr
website : www.sarcoidose-infos.com 

Germany
Deutsche Sarkoidose-Vereinigung (DSV)
e-mail:  sarkoidose@aol.com 
website: www.sarkoidose.de 

Ireland
Irish Sarcoidosis Support Network
e-mail: info@isarc.ie
website: www.isarc.ie

Japan
Friends of sarcoidosis
e-mail: sato@sato.email.ne.jp
website: http://www.ne.jp/asahi/h/sato (japanese) - google translated version

The Netherlands
Sarcoïdose Belangenvereniging Nederland (SBN) - english description
e-mail:  info@sarcoidose.nl
website: www.sarcoidose.nl 

Belangenvereniging Longfibrosepatiënten Nederland - english description
e-mail:  longfibrosevereniging@home.nl 
website: www.longfibrose.nl

Switzerland
Schweizerische Sarkoidose-Vereinigung (SSARV)
e-mail:  info@sarkoidose.ch 
website: www.sarkoidose.ch 

United Kingdom
Sarcoidosis and Interstitial Lung Association (SILA)
e-mail: info@sila.org.uk
website: www.sila.org.uk

United States of Amerika
Foundation for Sarcoidosis Research (FSR)
website: www.stopsarcoidosis.org

Janine's Sarcoidosis Outreach Foundation (JSOF)
e-mail: sarcoidosis@jsof.org
website: www.jsof.org

Sarcoid Networking Association (SNA)
e-mail: sarcoidinformation@sarcoidosisnetwork.org 
website: www.sarcoidosisnetwork.org 

Sarcoidosis Network Foundation
website: www.sarcoid-network.org

Sarcoidosis Online Sites
website: www.sarcoidosisonlinesites.com

Pulmonary Fibrosis

Belgium
Belgische Vereninging voor Longfibrose v.z.w.
website: www.longfibrose.org

Germany
Lungenfibrose.de, hilfe & informationen für betroffene
website: www.lungenfibrose.de

Ireland
Irish Lung Fibrosis Association
e-mail: info@ilfa.ie
website: www.ilfa.ie

The Netherlands
Belangenvereniging Longfibrosepatiënten Nederland - english description
e-mail:  longfibrosevereniging@home.nl 
website: www.longfibrose.nl

USA
Pulmonary fibrosis foundation
e-mail: info@pulmonaryfibrosis.org
website www.pulmonaryfibrosis.org

Coalition for Pulmonary Fibrosis
e-mail: info@coalitionforpf.org
website: www.coalitionforpf.org

Others

Netherlands
Stichting LAM-Nederland
website: www.lam-nederland.nl 

Histiocytose Nederland
website: www.histio.nl
 

USA
Lymphangioleiomyomatosis (LAM) foundation
website: www.thelamfoundation.org

StopCAIDnow Inc. - Stop Childhood autoinflammatory disease
website: www.stopcaidnow.org