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Rare Disease

To Stand Beside Suffering

Editor’s Note: We’re honored to share the following article from our friends at the Courageous Parents Network. To see this article in its original format,

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Colorectal cancer

When the Silence Got Loud

Editor’s Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea, originally written by Bill Phillips, a colorectal cancer

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A tiny test can carry a lifetime of impact. Expanding awareness, access, and education around newborn screening means more families can have answers when they matter most—especially in the rare disease community. #NewbornScreening #NewbornScreeningAwarenessMonth #raredisease #RareDiseaseAwareness #patientadvocacy #PatientWorthy ... See MoreSee Less

A tiny test can carry a lifetime of impact. Expanding awareness, access, and education around newborn screening means more families can have answers when they matter most—especially in the rare disease community. #NewbornScreening #NewbornScreeningAwarenessMonth #RareDisease #RareDiseaseAwareness #PatientAdvocacy #PatientWorthy
21 hours ago

No wrong answers. We want to know what matters most to YOU.
What makes you feel truly cared for by a healthcare provider?
Is it someone who listens without rushing? Shows empathy? Has the knowledge to help? Communicates in a way you understand? Or follows up when the appointment is over?
There is a lot to learn from what patients value most. 🩺💬
#PatientVoice #PatientCenteredCare #PatientWorthy
... See MoreSee Less

No wrong answers. We want to know what matters most to YOU.
What makes you feel truly cared for by a healthcare provider?
Is it someone who listens without rushing? Shows empathy? Has the knowledge to help? Communicates in a way you understand? Or follows up when the appointment is over?
There is a lot to learn from what patients value most. 🩺💬
#PatientVoice #PatientCenteredCare #PatientWorthy
22 hours ago

Your experience with multiple myeloma deserves to be heard.
Patient Worthy is looking for people living with multiple myeloma who are willing to share their stories and help others feel less alone. Whether you’re newly diagnosed, navigating treatment, or have been living with multiple myeloma for years, your perspective can make a meaningful difference.
Interested in sharing your story? Connect with us here: ow.ly/BRcS50ZKZHJ or through the link in our bio to learn more.
#MultipleMyeloma #MultipleMyelomaAwareness #PatientStories #PatientVoice #BloodCancer #PatientAdvocacy #ShareYourStory #PatientWorthy
... See MoreSee Less

Your experience with multiple myeloma deserves to be heard. 
Patient Worthy is looking for people living with multiple myeloma who are willing to share their stories and help others feel less alone. Whether you’re newly diagnosed, navigating treatment, or have been living with multiple myeloma for years, your perspective can make a meaningful difference.
Interested in sharing your story? Connect with us here: https://ow.ly/BRcS50ZKZHJ or through the link in our bio to learn more.
#MultipleMyeloma #MultipleMyelomaAwareness #PatientStories #PatientVoice #BloodCancer #PatientAdvocacy #ShareYourStory #PatientWorthy
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