From RPA Maria Ferron
On 20 February 2023, the 1st HAE patient workshop organized by CSUR (Reference Centers, Services or Units of the National Health System) took place at La Paz Hospital in Madrid. Dr. Teresa Caballero was the coordinator of the course, and I had the pleasure of introducing HAEi to the attendees.
From President Sarah Smith, HAE Spain (AEDAF)
25th General Assembly & Annual Meeting: The 25th General Assembly and Annual Meeting of AEDAF took place on Saturday 22 April 2023 in La Paz Hospital, Madrid. For this very special milestone for AEDAF, we presented the online course “Expert Patient in HAE”, which was launched in May to coincide with hae day :-), and we will pay tribute to Dr. Teresa Caballero for her long professional career dedicated to HAE.
AEDAF Camino Walk 2023: Once again, AEDAF had organized an hae day :-) event on the Camino de Santiago, which took place from 13 to 17 May 2023.
The aim of hae day :-) on 16 May every year is to raise awareness of HAE among the general public and medical community in order to create an environment in which there is better care, earlier and more accurate diagnosis, and recognition that people with HAE can lead a healthy life. One of the main reasons for walking the Camino is the publicity we can generate as an hae day :-) event. The Camino Walk served as a statement that people with HAE, many of them frequently incapacitated by their attacks, are overcoming the obstacles to leading normal and fulfilling lives and can now feel free to undertake a journey of this nature.
This time we walked on the Portuguese route of the Camino de Santiago, an extensive network of pilgrimage routes leading to Santiago de Compostela in Galicia, in the northwestern part of Spain. We were walking an average of 15 km per day for three days and had a short walk on the fourth day to the shrine of the Apostle Santiago (St. James) in the Cathedral of Santiago de Compostela. We were welcomed at an institutional reception in Hotel Monumento San Francisco in Santiago on hae day :-) on 16 May.
AEDAF were delighted to welcome more than 30 pilgrims to the Camino Walk 2023.
