Myoclonus with epilepsy with ragged red fibers
Other Names for this Disease
- Fukuhara syndrome
- Merrf syndrome
- Myoclonic epilepsy associated with ragged-red fibers
- Myoencephalopathy ragged-red fiber disease
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.
- You can submit a question to Ask the Mito DocSM , a service of the United Mitochondrial Diseases Foundation. Information contained in Ask the Mito DocSM is for informational and educational purposes only.
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 Social Security Administration has included this condition in their Compassionate Allowances Initiative. This initiative speeds up the processing of disability claims for applicants with certain medical conditions that cause severe disability. More information about Compassionate Allowances and applying for Social Security disability is available online.
- 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.