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Lymphangiomatosis

What is Lymphangiomatosis?

Lymphangiomatosis is a rare condition where a lymphangioma is present in a widespread or multifocal manner.

 

Lymphangiomatosis is a rare condition where a lymphangioma is present in a widespread or multifocal manner.
Acknowledgement of Lymphangiomatosis has not been added yet.
Prevalence Information of Lymphangiomatosis has not been added yet.
Synonyms for Lymphangiomatosis has not been added yet.
Cause of Lymphangiomatosis has not been added yet.
Symptoms for Lymphangiomatosis has not been added yet.
Diagnosis of Lymphangiomatosis has not been added yet.
Diagnostic tests of Lymphangiomatosis has not been added yet
Treatments of Lymphangiomatosis has not been added yet.
Prognosis of Lymphangiomatosis has not been added yet.
Tips or Suggestions of Lymphangiomatosis has not been added yet.
References of Lymphangiomatosis has not been added yet.
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Community Resources
Title Description Date Link
LGD Alliance

The mission of the LGD Alliance is to improve the care of patients with lymphangiomatosis and Gorham's disease by promoting research that will identify effective treatments and ultimately a cure for these diseases.

03/20/2017
PubMed

Go to the link mentioned above: http://www.ncbi.nlm.nih.gov/sites/entrez

 

 

Enter in the "for" box - just below the PubMed logo - the words "lymphangiomatosis", or "Gorham's disease", or "Gorham-Stout Syndrome". This will present lists of most of the Case Report medical literaure.

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.

Community Leaders

 

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I am president of the LGD Alliance (Lymphangiomatosis & Gorham's Disease), http://www.lgdalliance.org - a worldwide patient support foundation dedicated to funding research: to find the causes of...

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