New Dedicated Clinical Trial Site Launched to Accelerate Epidermolysis Bullosa Research
- January 26, 2026
Terminal Ileum’s Rogue B Cells: A Novel Gateway to IgA Nephropathy
One-Time Gene Therapy Offers New Hope for Hunter Syndrome
Oral FGFR Inhibitor Shows Promise for Children With Achondroplasia
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Waiting for test results? The waiting is hard, the anxiety is real, the uncertainty weighs heavy. But you're stronger than this moment, and you're not alone!
#patientadvocacy #mentalhealth #youarenotalone #TestResults #PatientWorthy
❤️ Kawasaki Disease Awareness Day | January 26 ❤️
Today, we join families, advocates, and medical professionals around the world in recognizing Kawasaki Disease Awareness Day — a day dedicated to shining a light on the leading cause of acquired heart disease in children. Early detection is critical to preventing lifelong heart complications.
Kawasaki Disease can be difficult to identify because it often looks like other childhood illnesses. That’s why awareness matters. The more we know, the faster kids can get the lifesaving treatment they need.
✨ How you can show support today:
🔴 Wear red
🏠 Light up your home or workplace in white and red
📲 Share facts and stories using #LightsOnHeartsStrong to help raise awareness worldwide.
Together, we can help protect children's hearts and stand with every family affected by Kawasaki Disease. ❤️
#KawasakiDisease #PatientWorthy #ProtectTinyHearts
Go to your conference ! #PFIC PFIC Advocacy and Resource Network, Inc.⏰ One week until conference registration & travel scholarship applications open!
Mark your calendars for February 2nd when you can secure your spot at the 2026 PFIC Family & Scientific Conference in Chicago on July 9-10. Early bird pricing will be available through May 16th. Register early to save and receive a conference t-shirt!
We're committed to making this event accessible to as many families as possible. Travel scholarship applications will also open when registration goes live. The application deadline is March 2nd.
Get ready to join us for two days of connection, learning, and collaboration!
#communityconnection #liverdisease #pfic #raredisease #hepatologyconference #chicago
