Only about 50% of those born with GACI survive. Patient Worthy is grateful to GACIGlobal for the ability to share Sienna’s Story. GACI Global is
Inflammatory bowel disease (IBD) affects approximately 1.6 million people in the U.S. According to a report in Healio, this equates to about 1.3% of the
SLC13A5 Epilepsy affects not just individuals, but friends and families as well. The following perspective, as told by Amber, mom to TESS Superhero Rowan, aims
Hi everyone, my name is Dwayne; I am 57 years old. I was diagnosed with Late Onset Pompe disease (LOPD) in November 2018 when I
Measles cases in Texas and New Mexico have doubled according to Becker’s Clinical Leadership surpassing 200. 30 cases have been confirmed in New Mexico, mostly
Patient Worthy is grateful to present this article by way of the CureGRIN Foundation. CureGRIN is a foundation founded and run by parents who are committed to
Patient Worthy is honored to be able to share Zoe Ridgeway‘s story by way of theBHDFoundation.org. Zoe’s story was shared for Rare Disease Day 2025
A presenter at the COPD 2024 International Conference spoke about the ease with which heart failure and preserved ejection factor (HfpE) is misdiagnosed in COPD
Editor’s Note: Patient Worthy is grateful to present this article that was written by and shared with permission from Sue Skavlem, a care partner to her
Sixty-six-year-old Tim Andrews, a resident of New Hampshire, is the fourth patient worldwide to undergo a pig kidney transplantation. As reported recently in a Mass
As reported in a recent edition of the Harvard Gazette, AI is commonly used to analyze X-rays and scans. AI has begun to outperform physicians
The U.S. Food and Drug Administration (FDA) has approved GSK’s combination meningococcal vaccine, Penmenvy, for individuals aged 10 to 25 as reported by Biopharma Dive.
Patient Worthy is honored to bring you Levi’s story courtesy of our partners Miracle Flights. Miracle Flights is a non-profit organization that provides pediatric patients
In June 2023 Jenny Decker took time out from her job as a trauma nurse and sailed out of Kona, Hawaii, beginning her solo voyage
This article is written by Enrico Orzes and originally published on Osservatorio Malattie Rare (OMaR). It has been translated from Italian. Patient Worthy is grateful
Heal Canada is a non-profit dedicated to “patient advocacy, education and collaboration among patient advocacy groups and other healthcare stakeholders.” As part of their extensive
#epilepsyawareness @DravetSyndromefoundation
@NationalPKUAlliance #pku #padufa🎓 Up next at PKUniversity on April 8: Take a closer look at the upcoming TruePKU Externally-led Patient Focused Drug Development (EL-PFDD) meeting!
Our team of experts from the Kith Collective will share all about EL-PFDD meetings, how they make a difference for patients and caregivers, ways you can be involved, and what to expect at the TruePKU meeting on May 8.
Their goal – and ours! – is to build excitement and get our PKU community ready for this ONCE-IN-A-LIFETIME landmark event.
Please register here for the April 8 webinar that begins at 12:00 pm ET: zoom.us/webinar/register/WN_7TznY7AcQnWxs-Yp6lbMPg#/registration
The webinar will be recorded and posted to our YouTube page.
#NPKUA #PKUniversity #TruePKU #PFDD 🏫
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