From HAE Spain (AEDAF)
HAE Spain (AEDAF) Camino Walk 2023: AEDAF is pleased to announce that it will be organizing another hae day :-) event on the Camino de Santiago: the HAE Spain (AEDAF) Camino Walk 2023, which will take 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.
This time we will be walking 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 will be walking an average of 15 km per day for three days and have a short walk on the fourth day to the shrine of the Apostle Santiago (St. James) in the Cathedral of Santiago de Compostela.
One of the main reasons for us walking the Camino is the publicity we can generate as an hae day :-) event. The Camino Walk will serve 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.
The Camino Walk will be open for registration in January 2023 on a first come, first served basis. If you would like to register, we encourage you not to wait too long after registration opens, as we have limited seats available on the bus. The price will be 400 EUR per person (staying in a shared double or triple room) and 500 EUR per person in a single room.
AEDAF is looking forward to welcoming you to the Camino Walk 2023 from 13 to 17 May 2023.
2022 HAEi Global Leadership Workshop: Along with Sarah Smith (President of AEDAF and HAEi Board Member) and Maria Ferron (Secretary of AEDAF and HAEi Regional Patient Advocate for the Mediterranean, North Africa, and the British Isles), Spain was represented at the 2022 HAEi Global Leadership Workshop by eight members of AEDAF. Unfortunately, another two members who registered had to cancel at the last minute because of a severe health crisis in the family. Dr. Teresa Caballero of La Paz Hospital in Madrid was a member of the Scientific Program Committee. She gave an oral presentation in the scientific session on “Surveys on Access to Modern Medicines for Hereditary Angioedema (HAE)”, which summarized the results of the survey conducted by AEDAF in Spain, with a CSL Behring EU LEAD Grant (2021), on the availability of and access to modern HAE treatments in Spain based on place of residence.
We were excited to be “Together Again”, and we all found the workshop useful, motivating, and fun! Our congratulations to HAEi and all the fantastic people involved in making this a tremendous success!
AEDAF 25th General Assembly & Annual Meeting: We are also pleased to announce that AEDAF will be celebrating its 25th anniversary with its 25th General Assembly and Annual Meeting, which will take place on 22 April 2023, in the venue where we have met every other year: La Paz Hospital in Madrid. To celebrate such a significant milestone, we hope to offer a very interesting program with national and international news about activities, innovations, and new initiatives for HAE patients.
