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Choosing Hope

Editor’s Note: Patient Worthy is honored to share this piece from our friends at Elephants & Tea, originally written by Katie Newbaum. To see the

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10 hours ago

TSC is a genetic disorder that causes benign tumors to grow in the brain, heart, kidneys, lungs, skin, and eyes. 1 million people worldwide live with it. Many spend years searching for answers before diagnosis.

TSC Global Awareness Day is about changing that. See the signs. Fund the research. Support the families navigating appointments, medications, and uncertainty every single day. Because awareness creates earlier diagnosis. Earlier diagnosis creates better outcomes. And no one should face TSC alone.

#TSCGlobalAwarenessDay #TuberousSclerosisComplex #PatientWorthy
... See MoreSee Less

TSC is a genetic disorder that causes benign tumors to grow in the brain, heart, kidneys, lungs, skin, and eyes. 1 million people worldwide live with it. Many spend years searching for answers before diagnosis.

TSC Global Awareness Day is about changing that. See the signs. Fund the research. Support the families navigating appointments, medications, and uncertainty every single day. Because awareness creates earlier diagnosis. Earlier diagnosis creates better outcomes. And no one should face TSC alone.

#TSCGlobalAwarenessDay #TuberousSclerosisComplex #PatientWorthy
12 hours ago

A diagnosis can change everything — but for individuals living with Epidermolysis Bullosa (EB), getting answers is often the first step toward proper care, support, and improved quality of life. Because EB affects the skin on a genetic level, specialized testing helps identify the exact type, guide treatment decisions, and monitor complications early. Awareness and education matter, especially for rare conditions that are often misunderstood. Every diagnosis tells a story, and every story deserves understanding, advocacy, and hope. 💙
#EpidermolysisBullosa #EBAwareness #PatientWorthy
... See MoreSee Less

A diagnosis can change everything — but for individuals living with Epidermolysis Bullosa (EB), getting answers is often the first step toward proper care, support, and improved quality of life. Because EB affects the skin on a genetic level, specialized testing helps identify the exact type, guide treatment decisions, and monitor complications early. Awareness and education matter, especially for rare conditions that are often misunderstood. Every diagnosis tells a story, and every story deserves understanding, advocacy, and hope. 💙
#EpidermolysisBullosa #EBAwareness #PatientWorthyImage attachmentImage attachment+2Image attachment
14 hours ago

#MPS @ProjectAlive ... See MoreSee Less

#MPS @ProjectAliveImage attachmentImage attachment+1Image attachment
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