Reflections on the 2025 HCMA Annual Patient Meeting

Reflections on the 2025 HCMA Annual Patient MeetingIssue #13 of "What's Her Problem?": Being a student of your disease or disability makes the journey a smoother one. Never stop learning.Last Saturday, I attended the Hypertrophic Cardiomyopathy Association’s (HCMA) Annual Patient Meeting for the first time.#BigHeartBigLifeEach issue of “What’s Her Problem?” includes questions for further discussion. You can Leave a Comment publicly below, or become a Paid Subscriber to join the conversation in the private community Chat.This week’s questions:How do you stay up-to-date on advances in your disease or disability? Is there a patient advocacy group you’re involved in or that you can reach out to, as needed?References/Links:4hcm.orghttps://www.4hcm.org/center-of-excellencehttps://www.4hcm.org/coe/upennhttps://www.4hcm.org/coe/ucsfhttps://whatsherproblem.substack.com/p/lets-discuss?r=heamxhttps://whatsherproblem.substack.com/p/surgiversary?r=heamxhttps://www.4hcm.org/coe/langonehttps://www.4hcm.org/coe/morristown-2https://whatsherproblem.substack.com/p/failing-up?r=heamxhttps://www.4hcm.org/elizabeth-t-mcnamee-advocacy-committeehttps://substack.com/@whatsherproblem/note/c-153812727?r=heamx&utm_source=notes-share-action&utm_medium=webPaterick TE, Patel N, Tajik AJ, Chandrasekaran K. Improving health outcomes through patient education and partnerships with patients. Proc (Bayl Univ Med Cent). 2017 Jan;30(1):112-113. doi: 10.1080/08998280.2017.11929552. PMID: 28152110; PMCID: PMC5242136.https://www.4hcm.org/hcm-many-namesNote: I am not a doctor and am presenting my general understanding, as opposed to the scientific details, though I hope you will research those further, if interested.https://www.4hcm.org/medications-dynamic-page-template/myosin-inhibitors This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit whatsherproblem.substack.com/subscribe