Other Internet Locations Discussing Sarcoidosis

Support Groups

Information About Sarcoidosis

Note:see also the article "The Web We Weave...Sarcoidosis on the Internet" It contains over 200 links including some of the links listed here. The list is annotated as well.


Support Groups and Support Pages

Sarcoidosis Online Sites
This site has more relevant links to other sarcoidosis pages than any other web site I have seen.
It is also organized very well and most of the information referred to is reliable with few exceptions.
One of the newest features is a directory of physicians and support groups around the country.
The link to this is Sarcusa

National Sarcoidosis Resources Center
Contact Person: Sandra Conroy

Foundation for Sarcoidosis Research (www.stopsarcoidosis.org)
The Foundation for Sarcoidosis Research (FSR) is the nation’s leading nonprofit
organization dedicated to improving care for sarcoidosis patients
and to finding a cure for this disease. Since establishment in 2000,
FSR has worked diligently to provide resources to thousands of
patients, their families and their physicians as well as funded
several domestic and international research efforts.

Mt. Sinai Sarcoidosis Support Group
Another support group!. This is great news for sarcoidosis patients. This particular group was started at the medical center where Dr. Louis Siltzbach was located. Dr. Siltzbach was probably the most famous investigator in the field of sarcoidosis in this country. His papers are legendary. This page is a good resource for patients, especially those living in the New England area. Dr. Teirstein who is world renown for his expertise in sarcoidosis now runs that facility.

Belgium Sarcoidosis Support Group
This site has existed since 1992. The secretariat is located in the Department of Pulmonary Medicine in the University Hospitals Leuven, Belgium
Contact:Ms Hilde Santermans

Sarcoidosis World Wide Support Group - Canada which has recently expanded
This site has a number of useful links and claims to be the Canadian counterpart to
the Sarcoidosis World Wide Support Group in the USA
Contact Persons: Lynn & Mar Hodgson
e-mail: hodgsons@worldchat.com

Orphanet
Orphanet is a French database on rare disorders which includes sarcoidosis.
Contact Person: Elodie LECOUTURIER.

Sarcoidosis Patients Associations in Europe

European Association of Patients Organisations of Sarcoidosis and other Granulomatous Disorders EPOS
Secretariat: Academish Ziekenhuis VU
P/a V.U. - ziekenhuis
Hoogbouw kamer H 309
Postbus 70 57
1007 MB Amsterdam
Netherlands
Phone / Fax: ++31-20-444 32 04
Email:info@sarcoidosis-epos.com
Web?www.sarcoidosis-epos.com

Vereniging voor Sarcoidosepatienten v.z.w.
Secretariat:
Herestraat 49 3000 Leuven
Belgium
Phone: ++ 32 - 16-34 68 06
Fax: ++32 - 16-34 68 03
e-mail:hilde.santermans@uz.kuleuven.ac.be

Deutsche Sarkoidose-Vereinigung e.V.
Secretariat:
P.O. Box 30 43
40650 Meerbusch
Germany
Phone / Fax: ++49 - 2150 - 7360
Email: Sarkoidose@aol.com
Web: www.Sarkoidose.de

Besnier Boeck / Sarcoidose Belangenvereniging Nederland BBSBN
Secretariat:
Academish Ziekenhuis VU
p/a V.U. - ziekenhuis
Hoogbouw kamer H 309
Postbus 70 57
1007 MB Amsterdam
Netherlands
Phone / Fax: ++31 - 20 - 444 32 04
Email: sarcoidose.info@vumc.nl
Web: www.sarcoidosis.nl

Schweizerische Sarkoidose Vereinigung SSARV
Secretariat c/o Doris GutzwillerPappelveg 14
4147 Aesch Bl
Switzerland
Phone: ++ 61-701 16 34
Email: ssarv@swissonline.ch
Web: www.sarkoidose.ch

Sarcoidosis and Interstitial Lung Association S.I.L.A
c/o Chest Clinic Office
Victoria & ALbert Ward
King's College Hospital
Denmark Hill
London SE5 9RS
United Kingdom
Email: info@sarcoidosis.org.uk
Web:www.sarcoidosis.org.uk


Information About Sarcoidosis

Statement on Sarcoidosis, 1999
Official statement on sarcoidosis made by the joint efforts of the American Thoracic Society, European Respiratory Society, and World Association of Sarcoidosis and Other Granulomatous Disorders

NHLBI Booklet
National heart, lung, and blood institute page. You can view the excellent booklet on sarcoidosis designed for patients and published by the NHLBI.

Interactive Slide Show on Sarcoidosis from the National Library of Medicine

National Jewish Hospital, Denver, Colorado
A discussion of selected areas relating to sarcoidosis. Some of these are more technical and are oriented for the physician.

American Lung Association Fact Sheet on Sarcoidosis
A succinct list of key facts about sarcoidosis.

Fact Sheet on Living with Sarcoidosis Published in JAMA

Arthritis Foundation Fact Sheet on Sarcoidosis

Baylor COM:Otolaryngologic Manifestations of Sarcoidosis

Cornell U.:Sarcoidosis case

U. of Iowa:"Naked granuloma" in Sarcoidosis

U. of Iowa:Cutaneous Sarcoidosis - Right Cheek

U. of Iowa:Epithelioid cells in a naked granuloma of Sarcoidosis
Closer view of same image described above.

Granulomas
An interesting and information site by a pathologist with a major interest in granulomas and specific interest in sarcoidosis.

Dermatlas
The Dermatlas is an international collaborative project that enables
health care professionals, parents, and patients to access high quality dermatology images on the World Wide Web.
The Dermatlas also includes an online Dermatology Quiz at http://dermatlas.med.jhmi.edu/derm/quiz.cfm that allows
trainees to test their diagnostic skills.

Gallium Scan

Bronchoscopy

Bronchoscopy Protocol From NIH

Controversial Information Can Be Found on the Following Pages

Millimeterwave Therapy and Opinions of the Study from Patients
A study using millimeterwaves reported from Russia. Interesting responses from patients and others, most of which is doubtful of the utility of this form of therapy and skeptical of the methods used in the study.

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Last updated 11/20/06