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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
During Rare Disease Month, Patient Worthy is honored to share a story from Steven who has been diagnosed with Waldenström's macroglobulinemia.
"My name is Steven and I am 73 years old, and in 2014, I was diagnosed with Waldenström's macroglobulinemia. Having a rare blood disease means staying on top of my health by constant follow-ups at a specialist several states away.
Having this rare disease means taking it one day at a time. I want to do things on my own, but I appreciate all of the help I get as my activities are limited at work.
I look forward to February each year as Rare Disease Month calls attention to those who have been diagnosed with a rare disease.
February is also another chance to advocate for rare disease as I hope one day there will be a cure for Waldenström's macroglobulinemia instead of just being treatable."
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy
