Eighty-five-year-old Frank Meuers considers his 500th immunoglobulin infusion to be a cause for celebration. Frank has logged details of his doctor’s visits since his first dose of replacement therapy with…
When Tucker Krause was a young boy, his family noticed that he frequently got sick. More than frequently, even. In fact, when his mom really thinks about it, Tucker was…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…
The coronavirus pandemic has significantly altered not just the world we live in, but the way we engage within this new world. It has been difficult and isolating to…
When the COVID-19 pandemic began, many people wondered how it would impact them, especially if living with a rare disease or condition. As the pandemic has progressed, more research has…
A research study led by Professor Beishi Zheng from Columbia University has studied the immunogenetics of gastrointestinal (GI) cancers. The Study This study demonstrated that individuals who are diagnosed with…
Heather White Heather White is a 41-year-old woman who was diagnosed with common variable immune deficiency (CVID) back in 2004 after fighting frequent bouts of pneumonia. Doctors believe that she…
I’m writing this article now because it was something that I needed one year ago and didn’t have. I didn’t know anyone who had moved abroad with Common Variable Immunodeficiency…
For any John Oliver fans out there, you know his thing is deep-diving into topics of importance - from beauty pageants to international elections to failing American infrastructure - just…
As seen by her story on IDF's website, for Kayla Kuehl, her diagnosis of an extremely rare disease happened over the course of several years. It's called Common Variable Immune Deficiency…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
