Parkinson disease type 9
Other Names for this Disease
- Autosomal recessive Parkinson disease 9
- CLN12 disease
- Kufor-Rakeb syndrome
- Pallidopyramidal degeneration with supranuclear upgaze paresis, and dementia
On this page
- How to Find a Disease Specialist – A video developed by GARD Information Specialists that explains how you can find specialists for a rare disease.
- Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find a Disease Specialist fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.
- The National Parkinson Foundation has Discussion Forums where questions about Parkinson disease are answered by experts.
- The National Parkinson Foundation can help you search for a health care professional, center, chapter, or support group in your area.
- The Parkinson’s Information Service (PINS) is a national helpline supported by the Parkinson's Disease Foundation. Call toll-free1-800-457-6676 Monday through Friday from 9am to 6pm Eastern Time.
You may wish to discuss your concerns with a genetics professional. The following online resources can help you find a genetics professional in your community:
- The American College of Medical Genetics has a searchable database of US genetics clinics.
- The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.