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Lymphangioleiomyomatosis

What is Lymphangioleiomyomatosis?

Lymphangioleiomyomatosis is a rare idiopathic disorder.

 

Lymphangioleiomyomatosis is a rare idiopathic disorder.
Acknowledgement of Lymphangioleiomyomatosis has not been added yet.
0.1http://www.orpha.net
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Hi! Created by lu8x
Last updated 25 Dec 2008, 10:16 PM

Posted by idomme
25 Dec 2008, 10:16 PM

Hello Luciana, I also have LAM , but I was diagnosed later than you- my diagnosis came at 42. How is the LAM scene in Argentina? I am enrolled in a clinical drug trial for Sirolimus- which has been shown to be effective in a smaller study that was done here.

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LAMsight

If you are a patient, you can use LAMsight to share your knowledge anonymously and learn from other patients around the world. LAMsight enables you to contribute to research happening now and makes it possible for you to be contacted if you qualify for future clinical trials.

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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Hi!

Created by lu8x | Last updated 25 Dec 2008, 10:16 PM


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