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X-Linked Lymphoproliferative Disease

What is X-Linked Lymphoproliferative Disease?

X-Linked Lymphoproliferative Disease is a rare genetic immunodeficiency disorder characterized by an underactive or overactive immune system.

 

X-Linked Lymphoproliferative Disease is a rare genetic immunodeficiency disorder characterized by an underactive or overactive immune system.
0.1http://www.orpha.net
Synonyms for X-Linked Lymphoproliferative Disease has not been added yet.
Cause of X-Linked Lymphoproliferative Disease has not been added yet.
Symptoms for X-Linked Lymphoproliferative Disease has not been added yet.
Diagnosis of X-Linked Lymphoproliferative Disease has not been added yet.
Diagnostic tests of X-Linked Lymphoproliferative Disease has not been added yet
Treatments of X-Linked Lymphoproliferative Disease has not been added yet.
Prognosis of X-Linked Lymphoproliferative Disease has not been added yet.
Tips or Suggestions of X-Linked Lymphoproliferative Disease has not been added yet.
References of X-Linked Lymphoproliferative Disease has not been added yet.
Info seek and share Created by adbianchi
Last updated 21 May 2013, 09:01 PM

Posted by adbianchi
21 May 2013, 09:01 PM

Hi all I am a family friend of 10 yo affected boy currently hospitized for severe diarrhea (continuos episodes up to 30 discharge per day) which seems unstoppable. Doctors are confused and situation critical. Nothing seems to work. Has anyone had any past experience of similar symptoms and , very very important, is there anyone able to indicate a medicine or procedure which worked well to stop diarrhea ?? Parents are desperate and doctors have tried various therapies but nothing seems to work. Confidently looking for some info.. thanks in advance for anything you may tell me. Dany

Community Resources
Title Description Date Link
XLP Research Trust

Founded in 2005, the XLP Research Trust exists to promote and fund research into the cause, management, symptoms and cure for XLP, provide a point of contact and support for those families affected by XLP, and raise the awareness of XLP amongst the medical profession and the general public.

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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Info seek and share

Created by adbianchi | Last updated 21 May 2013, 09:01 PM


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