Hypertrofisk Kardiomyopatis Svenska Sällskap (HCM Swedish Society) – HCM SS
Disease(s) Covered
Familial Cardiomyopathies
- Hypertrophic Cardiomyopathy (HCM)
- Hypertrophic Obstructive Cardiomyopathy (HOCM)
Aims of the Organization
HCM Swedish Society is the only HCM patient advocacy organization in Sweden as well as the most significant HCM organization in both Norway and Denmark. HCM Swedish Society is committed to:
- creating more awareness and knowledge about HCM
- contributing to earlier diagnosis, more research, more treatment possibilities and better and more equal health care for HCM patients
- supporting HCM patients and their families through their lifelong journeys with HCM
Activities of the Organization
Hypertrofisk Kardiomyopatis Svenska Sällskap/HCM Swedish Society (HCM SS) was founded in August 2022.
Since then we have continued growing and developing. Our membership base is steadily growing and has more than doubled in the last year only. We also have a Facebook group for HCM patients and their family members, a group which today is continuing to grow and has more than 700 members. The group is moderated by two of the board members of HCM SS.
Now into our fourth year of operations we have made great strides forward in working towards our aims with activities which includes:
- Created an extensive website in Swedish in collaboration with and mentoring from Hypertrophic Cardiomyopathy Association in USA (HCMA). The contents of the website have also been reviewed by Swedish cardiologists specializing in HCM.
- Published articles in media on the need for better and equal health care for HCM patients including access to new effective treatments.
- Started up digital discussion groups for HCM patients.
- Developed a patient brochure about HCM and distributing it to hospitals and cardiology clinics nationwide in Sweden.
- Started two webinar series; one for patients and their families “Living with HCM” and one for the profession “Diagnosis and Treatment of HCM”. HCM cardiologists who specialize in HCM have contributed their time pro bono to both series.
- Developed a newsletter distributed to stakeholders and members of the association with updates about the association and the latest news about HCM research, care and treatment options.
- Guided and supported HCM patients individually upon request.
- Identified a strategy suitable for the national Swedish health care system with the aim to improve the health care for HCM patients; a strategy which we are communicating to authorities, politicians and other stakeholders.
- Participated in international contexts to further HCM awareness.
Our motivation for doing this work is genuine and strong as all of us on the board are affected by HCM in some way; some of us have HCM while others are family members of HCM patients.
Email of the Organization