You recently learned that your child has inflammatory bowel disease (IBD). Now you’re taking an important step: learning about the condition, how it’s treated, and how your child can learn…
Homocystinuria is an extremely rare disorder. It is estimated that only 1 in 344,000 people in the world have it. Homocystinuria is a genetically inherited. This means the child’s parents…
Children need exercise. Not only for the health benefits but for the social benefits too. Playing games like hide-and-go-seek and tag, and participating in community sports like soccer and swimming,…
Let's talk about Mount Everest. It sits on the border between Nepal and China and its peak is 29,029 feet above sea level--which makes it the highest mountain on earth.…
Every spring, as the weather warms up, millions of Americans strap on their hiking boots, pack their tents, and head out into the woods for a weekend of fun and…
Living in fear—I don’t know how some people do it. I’m not talking about the shrieks from bugs or snakes. God, both of them freak me out. I’m not referring…
The Susan Skinner Memorial Fund (SSMF) Scholarship was created to help foster the education of the newest generation of bleeding disorder advocates and researchers. Two scholarships are being offered this…
Shortly after celebrating baby Eli’s birth, his family got the shocking news that Eli had a fatal disease called spinal muscular atrophy (SMA). Spinal muscular atrophy can take away Eli’s…
Earlier this week, you may not have seen our reporting on the latest move by China for the rare community. So in case you missed it... With the largest population…
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.
