The AHC association of Iceland is a patient association for patients with Alternating Hemiplegia of Childhood , a non-profit organization offering support for affected children and their families.
AHC association of Iceland was founded in March 2009 by Sigurdur Hólmar Jóhannesson and Ragnheiður Erla Hjaltadóttir parents of Sunna Valdís the first AHC patient in Iceland.
Artist Ólafur Darri Ólafsson is patron of AHC Association of Iceland
AHC is short for Alternating Hemiplegia of Childhood. Plegia refers to forms of paralysis of the body and or limbs, Hemi adds the scale of half the entire body to it and Alternating indicates that the forms of paralysis may change from one side of the body to the other. Childhood means that the disease is most often diagnosed during childhood, but it may well extend to adult patients.
AHC is a very rare neurological disorder with only about 250 patients worldwide.
Our main goals are to:
• Provide information about AHC in Iceland
• Provide support to the patients and their families.
• Look after interests of people with AHC and their families.
• Promote the study into the cause of AHC.
• Promote the study into an effective medical treatment for AHC.
How do we want to reach this?
• By providing and distributing information material and brochures and by maintaining a website.
• By contacting people and agencies that AHC patients may depend on in the future.
• By maintaining contact with foreign AHC Patient Associations.
• By contacting medical scientists who could contribute in finding the root-cause of AHC and a medical treatment for it.
Membership is open for people with AHC and their direct family members. The membership fee is €10 per year.
Members have access to and voting right on the general member meeting.