I had the pleasure of attending the Glut1 Deficiency Foundation’s 2019 Conference. While this article can't possibly do the event justice and encompass all it had to offer, we will…
According to a story from Biospace, the biopharmaceutical company Ultragenyx Pharmaceutical Inc. recently reported that its experimental product UX007 failed to achieve its primary endpoint in a recent clinical trial.…
My heart breaks for children who are suffering from a chronic or rare disease such as refractory epilepsy or Glut1 disease. My heart breaks as well for their parents, siblings, and grandparents…
Can you imagine your toddler son having to get a lumbar puncture in order to be diagnosed with a condition that, despite the fact that you've never heard of it, he'll…
Being a parent is tough. We never know if we’re on the right track. Too many thoughts of self-criticism come to mind: Am I doing this right? Do I practice…
Fields Taylor was 15 weeks old when she had her first seizure. They continued for months as doctors were unable to determine what was wrong. Then another seizure led to more tests…
This Halloween season, I want to revisit a post from more than three months ago that originally appeared on GoFundMe. It has since raised more than $18,000. "Grady will never taste…
Se les ve en todas partes - a pesar de que se ven fuera de lugar en la tienda de comestibles, o en el cine, o - peor aún -…
Cuando era una niña, Remi Savioz quería una cosa. Y no, no era un cachorro, una bicicleta, o incluso un viaje a Disneyland ... Remi lo que quería era una…
California is home to a large number of amusement parks that are beloved by thousands of children and their families. Of course we love theme parks; it’s American as apple…
As a young girl, Remi Savioz wanted one thing. And no, it wasn’t a puppy, a bike, or even a trip to Disneyland… What Remi wanted was a GLUT1 DS…
Sometimes a bit of skepticism is a good thing. RareConnect.org reports this was definitely true for Tina and Fernando when their sweet little boy, Nico, was diagnosed with epilepsy. At…
Epilepsy. Doose Syndrome. Lennox-Gastaut. While no parent expects to hear those words, he or she is even less raedy to learn that those words are wrong. RareConnect.org describes when Macie was only…
This Michelle Tanner look-alike (she even knows the signature "you got it, dude!") is one of the brave faces of GLUT1 DS. RareConnect.org describes Gracie as a bubbly, strong willed three…
Writing on the Internet can feel a lot like screaming into the void. You never know who can hear you or who even cares. But with the rare disease community…
Caring for a child diagnosed with a rare chronic condition is no small feat for anyone, but this Mom, Rebecca Martin, is definitely rising to the challenge. In her blog,…
When a doctor says it’s necessary to do a lumbar puncture on your two-year-old son, momma bear instincts kick in. Health News Digest reports that’s what doctors recommended when Lisa…
You see them everywhere--although they look out of place in the grocery store, or at the movies, or--even worse--grooving in dance club. Why are they not in school? They're teachers,…
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