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Finding the exact location of a change in the genome can bring long-awaited answers, turning years of uncertainty into clarity. For many in the rare disease community, pinpointing this spot is a key step toward an accurate diagnosis, understanding inheritance, and opening the door to more informed care and support. #rarewordoftheweek #raredisease #rarediseaseawareness #rarediseasemonth #PatientWorthy ... See MoreSee Less

Finding the exact location of a change in the genome can bring long-awaited answers, turning years of uncertainty into clarity. For many in the rare disease community, pinpointing this spot is a key step toward an accurate diagnosis, understanding inheritance, and opening the door to more informed care and support. #RareWordOfTheWeek #RareDisease #RareDiseaseAwareness #RareDiseaseMonth #PatientWorthy

Gaten Matarazzo's journey with cleidocranial dysplasia is a testament to resilience, advocacy, and the power of using your voice. This Rare Disease Month, we celebrate him and all those living with rare conditions! #rarediseasemonth #cleidocranialdysplasia #gatenmatarazzo #raredisease
#shareyourstory with us here: bit.ly/4dV7gru
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Gaten Matarazzos journey with cleidocranial dysplasia is a testament to resilience, advocacy, and the power of using your voice. This Rare Disease Month, we celebrate him and all those living with rare conditions! #RareDiseaseMonth #CleidocranialDysplasia #GatenMatarazzo #RareDisease
#ShareYourStory with us here: https://bit.ly/4dV7gru
11 hours ago

We're honored to share Kristen's story about living with myelofibrosis. Read here:

patientworthy.com/2026/02/17/we-will-never-ring-the-bell-my-myelofibrosis-story/
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Were honored to share Kristens story about living with myelofibrosis. Read here:

https://patientworthy.com/2026/02/17/we-will-never-ring-the-bell-my-myelofibrosis-story/
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