From HAE Spain
28th Annual Meeting of AEDAF Held in Seville
More than one hundred people participated in the 28th Annual Meeting of AEDAF in Seville.
The Spanish Association of Familial Angioedema due to C1-Inhibitor Deficiency (AEDAF) held its 28th Annual Meeting and General Assembly on February 21, 2016, at the Virgen del Rocío University Hospital in Seville, bringing together more than one hundred attendees, including patients, family members, and healthcare professionals.
The meeting brought together specialists from the three Reference Centers, Services, and Units (CSUR) for Hereditary Angioedema in Spain, to share knowledge, analyze the latest scientific advances, and improve the quality of life of people affected by this rare disease.
The day began with the General Assembly of members, during which the association’s activity report and financial statement were presented. Furthermore, the main lines of action for the coming months were defined, including the planning of initiatives for hae day :-), commemorated on May 16.
The scientific program then began, featuring prominent national experts who addressed hereditary angioedema from a comprehensive perspective. Among the topics covered were advances in genetics and genomics, presented by Dr. José Manuel Lucena (Virgen del Rocío Hospital); the burden of the disease on patients’ quality of life, presented by Dr. Nieves Prior (Severo Ochoa University Hospital); access to medications, presented by Dr. Teresa Caballero (La Paz Hospital); and current and emerging therapies, presented by Dr. Stefan Cimbollek (Virgen del Rocío Hospital).
Specific aspects were also analyzed, such as the impact of hereditary angioedema on women’s health at different stages of life, presented by Dr. Lidia Melero (Virgen del Rocío Hospital), as well as the importance of emotional well-being and psychological support for patients and their families, presented by psychologist Irene Murillo (Virgen del Rocío Hospital).
María Ferrón Smith, regional representative of the international organization HAEi, presented its resources and activities, and Fabio Lagunar shared his experience with the HAEi youth community.
The importance of shared decision-making between healthcare professionals and patients was also addressed as a key element for improving healthcare.
The program also included simultaneous practical workshops focused on nursing and health education. These included sessions on medication self-administration, patient self-care, improving doctor-patient communication, and an educational workshop for children, designed for younger attendees. To conclude the meeting program, a roundtable discussion entitled “The Patient Asks Questions” was held, in which attendees could ask questions directly to the specialists. The high level of participation was noteworthy.
The meeting was a success thanks to the organization and the engaging presentations by the participating medical specialists, as well as the interaction between patients and between patients and physicians, which is undoubtedly a crucial aspect of these assemblies.
