Rareshare

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

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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, 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.

Complete the screening form.
Review the informed consent.
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.