Statement by the Angiodysplasia Association Switzerland on the Federal Act on Measures to Combat Rare Diseases (BSKG)
As an association representing people with rare vascular diseases, the Angiodysplasia Association welcomes the BSKG and, like the RDAF, agrees with the Act in large parts. Within the framework of the new federal legislation, we particularly welcome the intended inclusion of all medical disciplines in data collection. This interdisciplinary approach will strengthen long-term collaboration and knowledge transfer between the various disciplines in healthcare and research, thereby sustainably improving care and access to care for people with rare diseases.
The Swiss Angiodysplasia Association was founded in January 2025 in Switzerland and, with limited resources, advocates for the interests of its members. We are people with rare and ultra-rare vascular diseases (Klippel–Trénaunay–Weber syndrome; Parkes Weber syndrome) with a prevalence of fewer than 5 per 100,000 persons. A core objective of the association is to connect medical professionals with patients. This aims to establish a sustainable network of knowledge and experience in order to improve the long-term care of affected individuals in Switzerland. The draft legislation of the BSKG contributes to promoting the objectives of our association.
We welcome the detailed right of objection for patients, and in particular the possible differentiation as listed in Article 8 paragraph 2. In order for patients to make an informed decision, it is especially important for the data listed under letter b that the patient is able to assess the scope of the data collected. We therefore consider it essential that the data catalogue defined in Article 19 be published and regularly updated in the event of changes.
With regard to Article 21, it must be ensured that the applicable Swiss legislation on data protection and data security can be fully applied and that the data infrastructure used for this purpose is ideally operated in Switzerland. Only in this way can it be guaranteed that data protection, data security and supervision, together with all associated legal remedies under Swiss law, are ensured at all times. It would therefore be desirable for appropriate references to other Swiss legal bases to be added to the proposed BSKG.
As a large proportion of our members have visible and individually clearly identifiable malformations, it is of particular importance to our association that, when such data are shared, the provisions of the Data Protection Act are applied without restriction and that the extraordinary sensitivity of these personal image and clinical data is given special consideration.
In all other respects, we refer to the statement of the RDAF.