Hemophagocytic Lymphohistiocytosis is a disorder characterized by fever, splenomegaly, jaundice, and hemophagocytosis.
Hello there, my name is Janelly Im from Mexico, my 3 moths old son, has just been dignose with HLH.
We are treating him in mexico but we are looking for change his treatmeant to the States, to Cincinnati Children's Hospital. Our insurence company just told us that they can't cover this disease, so we are looking for foundations or some economical help yo get to Cincinnati... do you know where or with who, can we find some help?
2 to 3 Oregano oil 150mg softgel after meals, 2 to 3 times a day. 2 to 3 Olive Leaf Extract 750mg capsule after meals, 2 to 3 times a day. Need to stop chemo and taper off steroids. These herbs can lower the ferritin levels drastically and increase platelets counts. Please give a try.
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.
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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