Patient Registry
With rare diseases like Lowe syndrome, the key thing patients and caregivers can do to advance research that may lead to better treatments and/or a cure is to participate in a patient registry. A patient registry scientifically and uniformly collects information about a group of patients with the same condition for research purposes. Participation is private, free of charge, and completely voluntary.
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LSA IN PARTNERSHIP WITH
Coordination of Rare Disease Patient Registry
If you or a loved one has been diagnosed with Lowe syndrome, you can make an important contribution to future research! Although the registry is currently available only in English, you may receive help from a trusted physician or family member to enter your information in English.
Questions?
Please contact CoRDS:
cords@sanfordhealth.org
1-877-658-9192