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Celine Dion’s Stiff Person Syndrome Treatment and Progress
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During Rare Disease Month, Patient Worthy is honored to share a story from Joanna who has been diagnosed with Primary Immunodeficiency (PI).
"My name is Joanna and I have been living with a rare primary immune deficiency disease my whole life. I turn 54 this month. I've been blessed in that my condition has an effective FDA approved treatment called immune globulin. It basically gives me a temporary immune system. I get infusions every week. I know so many rare diseases do not yet have an effective treatment and that is one reason it is so important for all of us to show our stripes and raise awareness. Every rare disease patient should have the help they need to live as healthy a life as possible. Together we are stronger."
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy #PrimaryImmunodeficiency
We are excited to share that Patient Worthy is headed to Washington, DC for Rare Disease Week! 🦓 💙
During Rare Disease Week, advocates from across the country gather to amplify the voices of the rare community, share powerful stories, and push for policies that improve access, research, and care. We're honored to stand alongside patients, caregivers, and other organizations making a difference.
If you'll be in DC next week, let us know in the comments! Let's keep raising awareness and driving change, together!
#rarediseaseweek2026 #raredc2026 #PatientWorthy
Behind every rare diagnosis is a story that deserves understanding.
💬 What’s one thing you wish people truly understood about rare disease?
Drop your thoughts below! #RareDiseaseMonth #RareDiseaseAwareness #RareDisease #PatientWorthy #ReplyAll
