Alternating Hemiplegia of Childhood (AHC)

AHC affects 1 in a million people and affects any and every neurological symptom. Many symptoms include seizures (both epileptic and non), status epilepticus, dystonia, hemiplegic attacks, and many more. AHC is caused by specific groups of mutations in the ATP1A3 gene.

AHC Awareness Day is on the 18th January each year. Learn more here.

🎧 Check out our podcast about AHC, here.

AESHA - the Spanish Association of Alternating Hemiplegia of Childhood

AESHA is the Spanish Association of Alternating Hemiplegia of Childhood (AHC), a non-profit organisation currently formed of 21 Spanish families and 1 Portuguese family with a relative diagnosed with AHC. AESHA’s main objectives are to support AHC families and encourage the exchange of experiences, raise awareness of AHC, organise fundraising activities to support international research projects, and promote the exchange of information and collaboration between doctors and researchers.

Please reach out to them if you are the parent, relative, or friend of someone diagnosed with AHC. They will be happy to help you understand the disease a little better, provide information about our experience, explain the possibilities of treatments that currently exist, and show you the different research projects that are currently underway.

Website: aesha.org
Twitter:  aesha_ahcspain

Alternating Hemiplegia of Childhood UK

Alternating Hemiplegia of Childhood UK supports families who have a child or loved one that have been diagnosed with AHC. For those who feel alone or/and are not sure what to do or where to go, they are here to help and support them.

AHC UK plays a key role in the creation of clinical reference centres, the development of Clinical Registries and Biobanks, working with the IAHCRC (International AHC Research Consortium - see below) to have scientists, clinicians, and families learn together.

Website: ahcuk.org
Twitter:  SupportAHCUK

The IAHCRC International Consortium for the Research on Alternating Hemiplegia of Childhood

The IAHCRC Consortium is a network of Clinical Centers, Research Laboratories and Scientific Organisations in Europe, North America, Asia and Australia, with active involvement in the research and in the care for the ATP1A3 rare diseases. They also work in close collaboration with the patient associations and with external scientific and mixed organisations. The IAHCRC Consortium aims to accelerate clinical and basic science research in the field of AHC and of all the ATP1A3 related diseases and to improve the quality of life of the affected patients and of their families.

Website:  iahcrc.net
Facebook:  iahcrc