The United Leukodystrophy Foundation is hosting two two-day long events for families and medical professionals! Here's all you need to know about it before registering: What: Cocktail reception and dinner, fascinating…
In my opinion, Sam Berns is the face of progeria. I first saw his inspirational Ted Talk, “My philosophy for a happy life,” a couple of years ago, but then…
Choroideremia is a disorder that progressively causes you to lose your sight. There is no cure. According to Pinstriped Prospects earlier this year, Markie DeVoe is a 12-year-old living with the…
The Tampa Pig Jig is an annual fundraiser fair held to support NephCure Kidney International, which is a nonprofit that focuses on funding research for Focal Segmental Glomerulosclerosis (FSGS). FSGS…
A mother’s love is like no other. But being told your child will be born with a rare and serious medical condition can be overwhelming. Especially when there’s no cure,…
Living with PBC: Learning Together For patients, family, healthcare professionals, and so many more! FEATURING: Certified PBC Nurse Educator, Jennifer Blood, and a Patient Ambassador, Deb Call 1-844-514-6294 to register and…
Rakesh Jain is a professor at the University of Texas Medical School, who recently spoke at a press conference for Neurocrine Biosciences. His talk was covered in an article published…
Ostiio, a new Philadelphia-based medical device company, has made it its mission to improve the quality of life for children that suffer from complications of craniofacial defects (in the middle of…
An immensely frustrating aspect of living with a health condition, and particularly a rare one such as idiopathic pulmonary fibrosis (IPF), is that other people might know nothing about the very disease…
Even good things can be bad in excess. I was always taught that moderation is the key in all things. Is it ok to drink that glass of wine? Yes.…
Alison Laird is 42 years old, and she has GNE myopathy. The disorder causes the progressive deterioration of muscles. It eventually causes immobility. For anyone, the news of this diagnosis…
Two lucky Lennox-Gastaut syndrome (LGS) researchers were awarded grants by the LGS Foundation last week on July 12. These two recipients are both doing fascinating work in LGS research and,…
Senator McCain has been a prisoner of war, has had a history of melanoma, and is 80 years old, so last Friday’s routine check-up didn’t end up being so routine.…
Dogs truly are man’s best friend. They share our lives with us, but now unfortunately, they also share our cancers. There have been speculations for a while that there are…
Learning as much as you can about your diagnosis is the first step toward empowering yourself to take control of your life and make decisions that will help you live…
There’s no question that when life gets chaotic, your health is often impacted. It’s important to maintain a healthy balance for eating and living. Especially if you have hemochromatosis. Hemochromatosis…
I started seeing George in the beginning of my second year of college. It was a great, no-strings-attached, friends with benefits “relationship” that was fun and carefree. After a couple of…
Parents will do anything for their children, especially Jeremy Cortner, father of son, Casey. According to Journel Sentinel Casey was diagnosed with craniosynostosis at birth, which is a rare condition…
If you've been looking for great psoriatic arthritis info, then you're in luck! We found an incredible website devoted to everything related to psoriatic arthritis. The aptly named psoriatic-arthritis.com is…
There is a rare disease—and I do mean rare because less than 100 people in the world have been diagnosed with it—and it has an uncommonly long name. Get ready…
The American Porphyria Foundation has a section on its website dedicated to telling patient stories. It gives voice to people's experiences and allows them to connect with others and share…
Sometimes I muse considering the first person to pioneer certain things. For example, who looked at mushrooms growing out of a decaying log and thought: “Yum”? Or how about the person…
We all remember that old adage that sports are 90% mental and only 10% physical. I remember thinking that every time I got done with baseball or soccer practice completely…
All Camden Fuller’s parents want is for him to have the chance to be healthy, grow up, and live a fulfilling life. That’s what every parent wants for their child.…
Fifteen is such an awkward age. Your body is growing; you might not have gotten past the clumsy, gawky, gangly stage yet. You’ve started to look at the opposite gender…
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