Rareshare

Title	Date	Link
Pfizer Steps Further In The Door For Gene Therapies	03/25/2019
Medicine by machine: Is A.I. the cure for the world’s ailing drug industry?	02/09/2020
AstraZeneca drug for rare disease shows promise in flushing copper build-up	08/29/2021
General Hospital' star Bergen Williams dead at 62 after battling rare Wilson's disease	11/20/2021

Community Resources

Title	Description	Date	Link
Volunteers wanted for Wilson Disease study	Wilson disease, also known as copper storage disease or hepatolenticular degeneration syndrome, is a rare disorder that can cause copper to accumulate in the liver, brain, and other vital organs. Researchers at Ultragenyx are conducting studies to better understand Wilson disease, and will use these findings to help move the science forward. Do you have a Wilson disease diagnosis? Wilson disease research is progressing, but can’t move forward without volunteers. Answer a few questions to see if you may be eligible to take part in research studies sponsored by Ultragenyx. New Wilson disease research can’t move forward without volunteers like you.	06/04/2021

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Volunteers wanted for Wilson Disease study

Wilson disease, also known as copper storage disease or hepatolenticular degeneration syndrome, is a rare disorder that can cause copper to accumulate in the liver, brain, and other vital organs. Researchers at Ultragenyx are conducting studies to better understand Wilson disease, and will use these findings to help move the science forward.

Do you have a Wilson disease diagnosis? Wilson disease research is progressing, but can’t move forward without volunteers. Answer a few questions to see if you may be eligible to take part in research studies sponsored by Ultragenyx.

New Wilson disease research can’t move forward without volunteers like you.

06/04/2021

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.

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J Mae

I'm a 23 year old jewish Ashkenazi female with a presumptive diagnosis of the neurological manifestation of Wilson's Disease. I suffer from a number of addiction,...