These educational resources were designed to provide reliable information to patients about their disease and symptoms, and to be an important resource for family members and health care professionals.
All organizations featured on our website have either sponsored the Registry or have conducted or planned research utilizing the resources of the Registry. Information from these resources does not necessarily represent the views of the Registry, but, in general, fits with the goals of the Registry. We welcome past, present, and future collaborators to use the resources of the Registry to disseminate pertinent, educational information to patients.
The information on this website is not intended to replace medical information offered by physicians or other qualified health professionals. Users should review any information posted on this website or any other website with their physicians.
Jim Hilbert and Liz Luebbe
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