HCM is a rare genetic disease and it is usually regulated as such, as far as treatment and drug development is concerned. We aim to create a database of regulatory documents relating to cardiological diseases in general and to HCM in particular. You can send us any document you deem relevant for this purpose via the contact form or via mail at [email protected]
Here are some key documents relating to HCM:
1. Council recommendation of 8 June 2009 on an action in the field of rare diseases – the document outlines the situation with rare diseases like HCM, recommends on the implementation of strategies and plans for dealing with them, and the creation of competence centers for trating them. – Download
2. 2023 ESC Guidelines for the management of cardiomyopathies – this is the key document of the European Society of Cardiology outlining all aspects of HCM diagnostics and treatment. This important document was the work of a task force, of which our Scientific Board chair Prof. Iacopo Olivotto was a member. – Download
3. A Policy Roadmap to improve cardiomyopathy detection and care in Europe is a document prepared by Cardiomyopathies Matter, an initiative funded by Bristol Myers Squibb. The document outlines some key actions that need to be taken on European level. It states that “Mobilising research and innovation should be a key part of EU- and national-level actions to improve cardiovascular health in general, specifically to address challenges and unmet needs in cardiomyopathies.” – Download
