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Scleroderma

What is Scleroderma?

Sclerodrema, also known as systemic sclerosis is a chronic disease in which there are excessive deposits of collagen in various organs.

 

Sclerodrema, also known as systemic sclerosis is a chronic disease in which there are excessive deposits of collagen in various organs.
Acknowledgement of Scleroderma has not been added yet.
42.0http://www.orpha.net
Synonyms for Scleroderma has not been added yet.
Cause of Scleroderma has not been added yet.
Since the collagen deposits vary in their locations, symptoms vary widely.
Diagnosis requires blood tests and other localized test in the specific organs affected.
Diagnostic tests of Scleroderma has not been added yet
While there is currently no cure for Scleroderma, there are various drugs and treatments that used to treat individual symptoms.
Prognosis of Scleroderma has not been added yet.
Tips or Suggestions of Scleroderma has not been added yet.
References of Scleroderma has not been added yet.
Journal of Scleroderma and Related Disorders Created by Amabanana2
Last updated 13 Jan 2017, 02:19 PM

Posted by Amabanana2
13 Jan 2017, 02:19 PM

Hi everyone, Last year we launched the Journal of Scleroderma and Related Disorders the first and only journal dedicated to scleroderma research. You can find out more about the journal at www.sclerodermajournal.com! You can sign up to receive emails and free articles on the website so I thought it might be of interest to you. If you have any questions about the Journal please don't hesitate to contact me: samantha.taylor@wichtig.com Many thanks, Sam

Bowel Problems Created by Kat201
Last updated 9 Nov 2010, 08:08 PM

Posted by Kat201
9 Nov 2010, 08:08 PM

Does anyone know if and how this disease affects your bowel? Katrina x

immune system restart Created by green
Last updated 10 Feb 2009, 06:22 PM

Posted by green
10 Feb 2009, 06:20 PM

A while ago on Mystery ER, an episode included a case of scleroderma in which a young Australian woman was stricken while visiting England. I don't remember the details, but from what I recall, doctors in Australia (?) destroyed her immune system as part of the treatment. After destroying her immune system, they restarted it successfully. Her new immune system was normal. Any details on that treatment?

Community External News Link
Title Date Link
Community Resources
Title Description Date Link
International Scleroderma Network

03/20/2017
Scleroderma Foundation

The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends.

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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My wife has scleroderma.

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Journal of Scleroderma and Related Disorders

Created by Amabanana2 | Last updated 13 Jan 2017, 02:19 PM

Bowel Problems

Created by Kat201 | Last updated 9 Nov 2010, 08:08 PM

immune system restart

Created by green | Last updated 10 Feb 2009, 06:22 PM


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