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Rare Disease

The Weight of a Decision

Editor’s Note: We’re proud to be the first to share this story by Blair Young Whitworth, a Parent Champion of the Courageous Parents Network. There

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11 hours ago

Transthyretin amyloid cardiomyopathy (ATTR-CM) happens when a protein called TTR builds up in the heart, making it harder to pump blood. It can cause fatigue, swelling, or shortness of breath but these symptoms are easy to mistake for something else.
That’s why stories and awareness matter! The more people who recognize the signs, the more likely it is to get caught early. If you're interested in sharing your story, click here: bit.ly/4dV7gru
#ATTRCM #AmyloidosisAwareness #HeartHealth #RareDisease #ShareYourStory #PatientWorthy
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Transthyretin amyloid cardiomyopathy (ATTR-CM) happens when a protein called TTR builds up in the heart, making it harder to pump blood. It can cause fatigue, swelling, or shortness of breath but these symptoms are easy to mistake for something else.
That’s why stories and awareness matter! The more people who recognize the signs, the more likely it is to get caught early. If youre interested in sharing your story, click here: https://bit.ly/4dV7gru
#ATTRCM #AmyloidosisAwareness #HeartHealth #RareDisease #ShareYourStory #PatientWorthyImage attachmentImage attachment+2Image attachment
12 hours ago

Did you know? Combined Small-Cell Lung Carcinoma (C-SCLC) blends features of two major lung cancer types within the same tumor. Let’s use Lung Cancer Awareness Month to spread knowledge and support everyone affected by rare lung cancers. #LungCancerAwarenessMonth #RareLungCancer #CSCLC #LungCancer #PatientWorthy
#ShareYourStory with us here: bit.ly/4dV7gru
... See MoreSee Less

Did you know? Combined Small-Cell Lung Carcinoma (C-SCLC) blends features of two major lung cancer types within the same tumor. Let’s use Lung Cancer Awareness Month to spread knowledge and support everyone affected by rare lung cancers. #LungCancerAwarenessMonth #RareLungCancer #CSCLC #LungCancer #PatientWorthy
#ShareYourStory with us here: https://bit.ly/4dV7gruImage attachmentImage attachment+1Image attachment
16 hours ago

A new ALS drug has begun accelerated development after a surge in early-stage clinical activity. Read more here:

patientworthy.com/2025/11/11/als-drug-development-accelerates-spotlight-on-medicinovas-mn-166/
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A new ALS drug has begun accelerated development after a surge in early-stage clinical activity. Read more here:

https://patientworthy.com/2025/11/11/als-drug-development-accelerates-spotlight-on-medicinovas-mn-166/
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