An interesting field trip this fall! KAESS participates in the 18th Annual HCM Meeting in Boston (US). This meeting is organized by HCMA (Hypertrophic Cardiomyopathy Association America). Founded in 1996 it has grown to be the largest organization in the world serving those with HCM, their families, and those providing care to HCM patients. Hypertrophic cardiomyopathy (HCM) is a primary disease of the myocardium (the muscle of the heart) in which a portion of the myocardium is hypertrophied (thickened) without any obvious cause, creating functional impairment of the cardiac muscle. HCM is estimated to affect 1 in 500 people!
KAESS is invited to this meeting to get inspired by HCM patients & families, learn more from clinical research (MD’s from top clinical hospitals in the US), and get insights in HCM advocacy.
This years exciting theme is “Taming the unruly heart – A Quest for Answers”. The meeting is packed with all the things those with HCM need to know to ensure they are getting the best care possible and to live a full and productive life. Sessions will lead to better understanding for patients, families and friends. HCM is complicated – the HCMA provides an agenda that covers all aspects of HCM from diagnosis to the emotional management of families with HCM.
KAESS’ PHILOSOPHY is that moving towards the patient is about truly listening to individual needs and desires a patient has, learning about him or her as a person and responding effectively to their needs with the right information.
WHY? We want to put patients in the heart of health care. We believe that with the right information and tools at hand a patient is prepared to take action and can participate more fully when decisions are made regarding the treatment options.
WHAT WE DO? KAESS develops online (mobile) patient education platforms where patients get educated, inspired and empowered.