‘Tis the season! Picture it. Salem, Massachusetts. It’s 1692 and suddenly, things have gone horribly, horribly wrong for you. In the middle of the night, a small band of angry…
You won’t come across too many people in your lifetimes like Elaine Gomez and her daughter, Michelle DeMont. And you probably won’t come across anyone who has died, or nearly…
Ok, it’s time for an experiment. Grab a random group of people off the street and stick them in a room (make sure to ask first, please). Ask them to…
Serendipity (n): the occurrence and development of events by chance in a happy or beneficial way. As many of you probably know, the journey to a cystinosis diagnosis is no walk…
An incurable disease that causes painful muscle spasms just got $45,000 closer to a cure. Dystonia is an uncomfortable condition that causes muscles to contract involuntarily, forcing the body to…
In August 2015, pharmaceutical giant, Shire, made public their new deal with Sanquin, the company that manufactures CINRYZE®. CINRYZE is a drug that is indicated for the rare disease disorder,…
Domingo didn’t want to go to yet another doctor. He’d had it. They never believed him when he described his weird and extremely painful swelling episodes. When he was a…
It's flipping Halloween week! While some of these stories will give you the good feels, we have one for you that will give you the heebie jeebies. Check out these…
Patient Worthy contributor, Andrea, has wonderful recipes for a healthy, delicious ankylosing spondylitis diet ! Stay tuned for more! I often get a blank stare of resistance when I explain…
Eric Mevis, suffers from dystonia, in his case oral mandibular dystonia, a rare disease that causes facial muscles, such as those in his lips and tongue, to twist and contract uncontrollably.…
Admit it. You never outgrew Halloween. Oh sure, you may not be able to score those sweet fun-size candy bars from the neighbors anymore (at least not without getting a…
When we left off, Andrea was undiagnosed and searching for answers, find out what happens next... At age 30, Andrea met the man of her dreams who convinced her…
I’ve found that through all of this, my son has started asking, ‘How can I help? What can I do?’ In a way, those are the very things the Immune…
The words “happy” and “healthy”—it’s what every parent wants to hear after the birth of their child. Clayton’s parents were no exception. In a Youtube video by Hopkin's children, Clayton's…
Recently, the Immune Deficiency Foundation (IDF) was invited to try for a grant sponsored by PI CONNECT. The grant would allow the IDF to study the compared effectiveness of antibiotic treatment for…
Dear strong one, I look at you and I see determination. Things are so hard for you right now, rushing from hospital to hospital. I know that you never imagined…
The Proclaimers said they would walk 500 miles for the one they love. This balloon does one better. In a blaze of purple, 600 balloons were released in the UK…
Los ves por todas partes – A pesar de que se ven totalmente fuera de lugar en el súper mercado o en el cine, o –pero aun- bailando en el…
Nos ha ocurrido a todos. Es un viernes por la tarde. Estas en el aeropuerto, ansiosamente esperando cerca de la puerta de abordo para el próximo vuelo. Han pasado demasiados…
Amanda and Emily Gale are twin sisters who have never let primary immunodeficiency diseases (PI) stop them from achieving at the highest levels--literally. As reported on the Immune Deficiency Foundation's…
Think about it: clinical trials are like a huge strip tease. They're waiting to put it all out there, but if no one comes, it’s a huge waste of time…
For many people in the rare disease community, becoming a medical detective is a matter of necessity. You read everything you can get your hands on, then burn up the…
What gets teens more hyped than watching someone get a pie in the face!? Apparently, nothing! At least, Joseph Maronski and Madison Shaw seemed to think that was a pretty solid…
Los ves por todas partes – A pesar de que se ven totalmente fuera de lugar en el súper mercado o en el cine, o –pero aun- bailando en el…
Yes, the weekend of October 9, saw the Hereditary Angioedema Association (HAEA) a mile high and happy--but not the way you're thinking! What's wrong with you? The HAEA hosted the…
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