Ohtahara Syndrome factsheet from the British Epilepsy Association
PubMed Medline search on Ohtahara Syndrome
Has information on over 1,000 rare syndromes and rare disorders and can put families in touch with each other. Also gives access to a database on rare conditions and disorders.
Aim to raise and maintain awareness about epilepsy and about Epilepsy Action’s work; educate people about the facts about epilepsy and improve their understanding of the condition.
See Epilepsy Support Groups
Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.
Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.
NHS Inform: brain, nerves and spinal cord
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.