From President Sarah Smith, HAE Spain (AEDAF):
HAEi/AEDAF Camino Walk 2019: AEDAF has again this year joined up with HAEi to organize the 3rd Camino Walk on the Camino de Santiago in Galicia (northwest Spain), to commemorate hae day :-) 2019. We had more than 50 pilgrims who walked three stages of the English Way on 16, 17 and 18 May. Just as the other years, it was a fantastic experience for all the participants and an excellent way to raise awareness of HAE, along with the HAE Global Walk. Spain was represented by 23 pilgrims, including patients, caregivers, friends and medical professionals, as well as our guide, Rafael Moreno (Rafa) of the Spanish Ministry of Education, Culture and Sports, who has been key to making the three Camino Walks in Spain such a success! Many thanks to him and to our bus driver Javier for all their work guiding us and keeping us on track! Rafa has provided us with the link to the Ministry’s Cultural Association blog, where he has posted some pictures of the event: www.asociacionculturalmc.blogspot.com.
On 16 May 2019, the pilgrims were welcomed for an official reception at Pazo de Mariñan, a historical Manor House that was bequeathed to the Diputacion Provincial [provincial government] de La Coruña in 1936 and is used for socio-cultural purposes. We were received by Valentin Gonzalez Formoso, President of the Diputacion Provincial, who applauded and supported our initiative intended to make HAE visible and advocate for more and better research to improve diagnosis and treatment. His address was followed by an excellent lunch and a short tour of the Pazo. Our most sincere thanks to Valentin Gonzalez Formoso and the personnel of the Pazo de Mariñán for such an outstanding show of support and a truly memorable afternoon in Pazo de Mariñán.
And congratulations to an amazing group of pilgrims. Hopefully, our paths will come together again next year in Germany. Buen Camino!
11th C1 Inhibitor Deficiency and Angioedema Workshop: AEDAF member Francisco Sanchez and I represented AEDAF at the workshop that took place 23-26 May 2019 in Budapest, Hungary. We were particularly happy this year for Dr Teresa Caballero, an allergist at La Paz University Hospital in Madrid (the leading HAE center in Spain), coordinator of the Spanish study group for Bradykinin Mediated Angioedema and leading national and international expert in HAE, who was chosen for this year’s “For HAE Patients” award. “For HAE Patients” is awarded at the workshop to a colleague who has made considerable efforts in the interests of HAE patients. Teresa more than meets that criterion thanks to her tireless work, dedication to her patients and many scientific and medical accomplishments. Our most sincere congratulations for a very well-deserved award!
Francisco Sanchez, who is a nurse and doctoral student at the University of Almeria in southern Spain, had a poster accepted in the Budapest workshop scientific program titled “Development and validation of the self-efficacy assessment questionnaire in the management of hereditary angioedema for patients and family caregivers (HAE-SES)”. Congratulations to Francisco as well for his early work as a young HAE investigator!
