From President Sarah Smith,
HAE Spain (AEDAF):
General Assembly & Annual Meeting: The 24th General Assembly and Annual Meeting of AEDAF took place 26 March 2022 in La Paz Hospital in Madrid. After two years of pandemic, we are very, very happy to again be able to have an in-person meeting and to see each face to face in real life. We had a very interesting program with news about activities, innovations, and new initiatives for HAE patients.
Survey: The project submitted by AEDAF to the call for proposals for the 2021 CSL Behring EU LEAD Grants was a survey (one for patients and one for physicians) on the availability of and access to modern HAE treatments in Spain based on place of residence. After receiving the grant and dealing with some delays, the survey was launched during the autumn and closed in mid-December 2021. AEDAF now has the draft of the Final Report on data analysis and interpretation (also containing an updated list of hospitals in Spain with a knowledge of HAE and availability of modern treatments). It reveals interesting data that confirm our suspicions of major differences in access to and availability of these modern treatments in Spain, as well as in approval for patients to keep these treatments at home and learn self-administration, depending on the Autonomous Region where they live.
The last phase of our project will be to disseminate and publish the survey results and submit them to the national Ministry of Health and the Regional Ministries of Health in Spain to underline these differences and to advocate for equality in healthcare and access for patients all over Spain, regardless of treatment price.
Workshop: The 1st National Scientific Angioedema Workshop, organized by the HAE and Dermo-Allergy CSURs (Reference Centers, Services and Units of the Spanish National Health System) of La Paz University Hospital, as well as CIBERER U754, CIBERER U761 and IdiPaz groups 21 and 44, and coordinated by Dr. Teresa Caballero Molino, took place on 17-18 February 2022 in La Paz Hospital in Madrid.
The idea is to hold this course, which is very important for improving knowledge and raising awareness of HAE, every two years. On behalf of AEDAF, we congratulate Dr. Caballero, the Scientific Committee and all the speakers for this excellent Workshop.
Patient Support Program: In an online press conference on 17 February 2022, CSL Behring announced its new innovative HAE patient support program in long-term prophylaxis. The program has been designed to lower the burden of disease and improve the patient’s quality of life, with individual attention and training in the subcutaneous self-administration of the C1-INH protein.
The program, developed in collaboration with the GEAB (Spanish Study Group on Bradykinin-Induced Angioedema) and now available throughout Spain, responds to the need to adopt individualized therapeutic strategies due to the heterogeneity of the disease.
