Other Names for this Disease
- Cerebelloparenchymal disorder 4
- Cerebellar vermis agenesis
- Joubert-Boltshauser syndrome
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- Finding Treatment Information - A video developed by GARD Information Specialists that explains how you can find information about treatment for a rare disease.
- GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions.
- Project OrphanAnesthesia is a project whose aim is to create peer-reviewed, readily accessible guidelines for patients with rare diseases and for the anesthesiologists caring for them. The project is a collaborative effort of the German Society of Anesthesiology and Intensive Care, Orphanet, the European Society of Pediatric Anesthesia, anesthetists and rare disease experts with the aim to contribute to patient safety.
- ClinicalTrials.gov lists trials that are studying or have studied Joubert syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- The University of Washington's hindbrain malformation research program invites individuals with this condition to participate in their research program. Click on the link for more information on how to participate in their research study.