Brown-Vialetto-Van Laere syndrome
Other Names for this Disease
- Pontobulbar palsy and neurosensory deafness
- Pontobulbar palsy with deafness
- Progressive bulbar palsy with sensorineural deafness
- Riboflavin transporter deficiency
- How to Get Involved in Research – A video developed by GARD Information Specialists that explains how you can find out about research for a rare disease.
- BVVL International has a registry for people affected with Brown-Vialetto-Van laere syndrome and their families. Through this registry they hope to hasten research and thereby treatment. For more information on research progress or to participate in ongoing research, you can contact BVVL International at firstname.lastname@example.org
- ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.
- NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.