The disease, genetic, is autosomal dominant , so that a child has a 50 % chance of getting it , if one parent has it.
The Spanish Association of Family Angioedema ( AEDAF ) has launched a new initiative for patients and affected relatives of AEH : "School of patient", with which aims to bring together patients with AEH and create a forum for discussion , with HAE specialist and patients : what should we know about our disease , we can claim that we can bring to the doctor treating us , we can do from AEDAF to improve the quality of life of patients with HAE.
It will set an undefined number of informative workshops , which will be directed to HAE patients , but also open to family members and medical personnel interested .
The idea is to hold these meetings at the level of Autonomous Region for members and nonmembers of AEDAF , with a frequency of about once a month , in places far from the centers of reference considered in each region where the disease is to give a date disease , its diagnosis and treatment information, as well as on the activities of AEDAF , then have (after a break ) discussion among attendees about their concerns and needs as well as the state of disease management in their areas.
Each workshop will be held on Thursday and will last for 3 hours, from 17:00 to 20:00 .
The first workshop is scheduled for January 30, 2014 and will take place at the Parador de Antequera (Málaga ) . It is planned to hold the second workshop in Valladolid on 20 February 2014 .
This initiative is sponsored by ViroPharma .