I recently read an interesting article about a new drug for hemophilia B called: Idelvion [Coagulation Factor IX (Recombinant), Albumin Fusion Protein] which I highly recommend that you read. It…
1. Leonard Trask Trask sufrió un incidente de equitación terrible cuando tenia unos 20 años que condujo a la inmovilidad y la deformación de su columna vertebral. Él entregó su vida…
“Courage” is an adjective people throw around with relative ease to describe people and decisions that are not really courageous: A politician who vouches for a bill that may cost…
"Being a full-time mother is one of the highest salaried jobs... since the payment is pure love" -Mildred B. Vermont Mom's always have a lot on their plates. A mom…
Starting June 13th, better health will be delivered right to your e-mail front door - if you sign up! Seriously, 14 days of small, easy changes that result in a…
Could it be? Could it REALLY be true? A breakthrough treatment for Lyme disease is here?! Well, according to what I read on the PR Newswire, it is. A specialty…
Students at North Carolina State aren’t letting the grass grow beneath their feet, knowing their feet can make a difference in a sick child’s life. At a recent dance marathon…
Being a rare mom is a nightmare. You never expected to have to tell your child that they have something that you can't fix. You always thought that you'd be…
As a mom to a child with a rare disorder I face many challenges everyday. My son's disorder requires me to weigh everything he eats and account for it, give…
What’s it going to take before an effective treatment gets approved by the FDA for acute and aggressive mastocytosis? Well, hopefully the mastocytosis community won’t have to wait too long! In…
"The Natural State of motherhood is unselfishness. when you become a mother, you are no longer the center of your own universe. your RELINQUISH that position to your children." -…
You never get warned about how boring being sick is. And when I was on treatment for chronic Lyme last year, that's exactly what is was. And also excruciating, pathetic,…
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.
