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Steroid-Sensitive Nephrotic Syndrome

What is Steroid-Sensitive Nephrotic Syndrome ?

Steroid-Sensitive Nephrotic Syndrome is a rare kidney disease.

 

Steroid-Sensitive Nephrotic Syndrome is a rare kidney disease.
Acknowledgement of Steroid-Sensitive Nephrotic Syndrome has not been added yet.
18.0http://www.orpha.net
Synonyms for Steroid-Sensitive Nephrotic Syndrome has not been added yet.
Cause of Steroid-Sensitive Nephrotic Syndrome has not been added yet.
Symptoms for Steroid-Sensitive Nephrotic Syndrome has not been added yet.
Diagnosis of Steroid-Sensitive Nephrotic Syndrome has not been added yet.
Diagnostic tests of Steroid-Sensitive Nephrotic Syndrome has not been added yet
Treatments of Steroid-Sensitive Nephrotic Syndrome has not been added yet.
Prognosis of Steroid-Sensitive Nephrotic Syndrome has not been added yet.
Tips or Suggestions of Steroid-Sensitive Nephrotic Syndrome has not been added yet.
References of Steroid-Sensitive Nephrotic Syndrome has not been added yet.
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Community Resources
Title Description Date Link
NephCure Foundation

The NephCure Foundation is the only organization solely committed to seeking a cause and cure for two potentially devastating kidney conditions, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). NephCure is made up of patients, their families and friends, researchers, physicians and other healthcare professionals joining forces to create awareness and generate funding for research.

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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