Hypertrofisk Kardiomyopatis Svenska Sällskap (HCM Swedish Society) – HCM SS

Representative: Jerker Liljestrand

Second contact person: Lottis Katarina Charlotte Hörting

Diseases covered:

Familial Cardiomyopathies
• Hypertrophic Obstructive Cardiomyopathy (HOCM)
• Hypertrophic Cardiomyopathy (HCM)
• Sudden cardiac death from HCM
• Grief support related to HCM

Aims of the Organization

• Provide information to HCM patients and their families
• Provide support to HCM patients and their families
• Provide information and training for health professionals
• Help improving the Swedish health care system in the provision of high quality HCM care

Activities of the Organization
HCM Svenska Sällskap, HCMSS, was founded in August of 2022.

Currently we have 36 paying members, and also manage a Facebook page with 400-450 members from Sweden, other Nordic countries and the USA.

In May, 2023, we launched an ambitious website for HCM patients and their families,
as well as including 5 separate sets of in-service training materials for health professionals. This website was at first developed based on a translation of the www.4HCM.org website of the Hypertrophic Cardiomyopathy Association of America, HCMA; it was thereafter adapted to Swedish conditions and expanded.

We continue to have a close collaboration with HCMA leadership, a collaboration that started several years before the actual founding of our Swedish/Nordic association.

Since there is no other patient organization for HCM in the Nordic countries, as yet, we also provide information and support as necessary to HCM sufferers in those countries (Norway, Finland, Denmark, Iceland).

Apart from the above, the board members have in the past 16 months i.a. done the following:
– contributed to debate in Sweden (national gatherings of patient organizations; national civil society conventions)
– created an information brochure about HCM and yet distributed >1000 of it to cardiac clinics in our 21 regions of public health care
– written to a large number of politicians about the need to approve the new drug against HCM (mavacamten)
– participated in Global Heart Hubs activities to spread awareness about cardiomyopathies on social media and at a face-to-face meeting in Italy
– written the National Board of Health and Welfare with our best suggestions on how to improve HCM care in the currently quite fragmented health care system in Sweden
– continuously communicated with the cardiologists of Sweden about HCM issues
– similarly with the “cardiogenetic network” among Swedish health professionals
– kept regular contacts with the drug company responsible for introduction of mavacamten in Sweden
– actively participated in the systematic collection of “patient journeys” of HCM patients in Sweden, in collaboration with a market research company
– applied for membership in an umbrella organization for patient organizations of “rare diseases” in Sweden
– organized our internal administrative and financial accounts work

Contact: info@hcmsvenska.se