Reflections on the 2025 HCMA Annual Patient Meeting

Issue #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.

#BigHeartBigLife

Each 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.org

https://www.4hcm.org/center-of-excellence

https://www.4hcm.org/coe/upenn

https://www.4hcm.org/coe/ucsf

https://whatsherproblem.substack.com/p/lets-discuss?r=heamx

https://whatsherproblem.substack.com/p/surgiversary?r=heamx

https://www.4hcm.org/coe/langone

https://www.4hcm.org/coe/morristown-2

https://whatsherproblem.substack.com/p/failing-up?r=heamx

https://www.4hcm.org/elizabeth-t-mcnamee-advocacy-committee

https://substack.com/@whatsherproblem/note/c-153812727?r=heamx&utm_source=notes-share-action&utm_medium=web

Paterick 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-names

Note: 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

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