Alternating Hemiplegia of Childhood UK

THE OBJECTS OF THE CIO ARE:TO PRESERVE AND PROTECT THE PHYSICAL AND MENTAL HEALTH OF FAMILIES AND INDIVIDUALS AFFECTED BY ALTERNATING HEMIPLEGIA OF CHILDHOOD (AHC) AND ASSOCIATED CONDITIONS BY:-(A) PROVIDING SUPPORT AND CREATING AND MAINTAINING COMMUNICATION CHANNELS BETWEEN THOSE PERSONS WHO ACT AS FAMILY CARERS AND SUPPORTERS SO AS TO DISSEMINATE KNOWLEDGE, EXPERIENCE AND THEREBY PROMOTE BOTH THE HEALTH AND QUALITY OF LIFE OF AHC PATIENTS AND THEIR FAMILIES;(B) RAISING AWARENESS AND EDUCATION OF THE MEDICAL PROFESSION AND OTHER RELEVANT PROFESSIONALS (INCLUDING BUT NOT LIMITED TO PSYCHOLOGISTS, CARE WORKERS, SCHOOL TEACHERS, THERAPISTS AND SUCHLIKE), TOGETHER WITH THE GENERAL PUBLIC, ON THE NATURE OF AHC (AND ASSOCIATED CONDITIONS) AND ITS IMPLICATION FOR FAMILIES;(C) ACTING AS AN ADVOCATE WITH PUBLIC SERVANTS AND ORGANISATIONS WITHIN THE UK (OTHER THAN THOSE INCLUDED IN OBJECT 2) SO AS TO BECOME THE VOICE OF AHC FAMILIES;(D) PROMOTING, ENCOURAGING AND FACILITATING RESEARCH INTO THE DIAGNOSIS, EFFECTIVE MANAGEMENT AND THERAPIES, AND POTENTIAL CURATIVE PROCEDURES; AND(E) ESTABLISHING AND MAINTAINING CLOSE LINKS WITH COUNTERPART ORGANISATIONS, RESEARCHERS AND SUCH LIKE THAT ARE BASED OUTSIDE THE UNITED KINGDOM, AND TO DISSEMINATE THE GROWING BODY OF KNOWLEDGE INTO THIS RARE CONDITION AMONGST INTERESTED PERSONS AND PARTIES WITHIN THE UK