It had never even crossed my mind that there was a connection between my bruised skin, clicking jaw, Sally Hansen's strengthening nail polish, the blue skin on my hands in…
"I believe there is a solution." Those are billionaire mogul Bill Gates's words regarding the future of Alzheimer's. "Any type of treatment would be a huge advance from where we…
It goes without saying that September 11th left a scar on the US that our country is still healing from 16 years later-- especially the families and communities who lost…
We're in a tumultuous time for Duchenne muscular dystrophy (DMD) treatment. Recently, the DMD community was outraged when the FDA rejected ataluren (Translarna), a promising new drug, for a disease…
Virginia Ventura, 25, woke up one morning when she was 6, and found she was unable to move her legs. There had been no warning signs that she remembered, but…
With original findings reported in Nature Communications, a newly tested compound, RU.521, may provide the key to understanding and combating autoimmune conditions such as Aicardi-Goutieres Syndrome, and Lupus. Cyclic GMP-AMP…
Amanda McGrory's teammates nicknamed her work out "The Stairway to Hell." Depending on how you feel about intense work outs, that could make you want to run away screaming, or…
In Chicago, a panel of lawmakers and parents are fighting back after the loss of children to a rare disease. Shermane Jenkins lost her two-year-old son to the very rare…
Residents of a small Kansas town united together to post fliers and posters, all to raise awareness about a boy with rare disease. Eleven-year-old Peyton suffers from Xeroderma Pigmentosum (XP).…
If you have psoriasis, you're familiar with the itchy, red patches of skin. The patches can show up anywhere. Typically, they're found on elbows, ankles, knees, and scalps. They might…
A spokesperson for Sarepta Therapeutics announced that their latest drug for the treatment of Duchenne muscular dystrophy is doing very well and is actually helping patients. Duchenne muscular dystrophy (DMD)…
Can you have too much of a good thing? Yes! Potassium, for one. It's an important mineral for human beings, essential for helping cells function normally. And that's just the start.…
Rare disease began shaping acclaimed photographer, Karen Haberberg's family years before she was born. Her parents had given birth to her older brother, who was diagnosed with Tay-Sachs. Tay-Sachs is a…
Three-year-old Ben Graham has grown an affinity for all things Police. He gets a thrill from their cars, their dogs and uniforms. But he's been suffering from neuroblastoma since his…
Twin three year olds, Marshall and Matthew, stole Linda Trapenier's heart the day she met them. She say she knew immediately "they were my boys." They're inseparable little boys, with…
Carol Town, 63, gave a big hug to surgeon, John Wallwork. They hadn't seen each other for 30 years. Carol attended a reception celebrating a professional accomplishment of Wallwork's, in…
Lily Mason, eight, saw her community uniting in support of her rare disease that only limits her eating to nine safe foods. The disease is called Mast Cell Activation Syndrome…
It's been on ongoing cancerous battle for nine-year-old Jacob Thompson. Ever since he was 5, he's been dueling his rare neuroblastoma. And after the treatment failed, the cancer has spread…
While other kids his age run amok in the wildness of their Terrible Two's, Lincoln Woodmass remains immobile. No running, no jumping and the possibility of never walking again. You…
Last week, science continued to break boundaries and save lives. In this case, a new gene therapy was used by doctors in Europe to replace the decaying skin of a…
Happy Friday! We have an FDA approval this week for rare cancer patients! We also have the details on a hypophosphatasia fundraiser. There's also an inspiring story of of a…
Jodie Davies is no stranger to rare disease. When her daughter Tia was born with a genetic bone development disorder, she never could have expected her next child, Caleb, to…
Renee Smith deals with an unusual feeling and she might be the only person who does. She feels like there are drops of water dripping on the side of her…
Doctors, medical resources, health classes, and moms agree: exercise is one of the best things you can do for your body and health. It helps manage some chronic conditions, and…
A UK family was almost certain they'd lose their baby, but it was her giggle that filled them with hope. When she turned 2 years old, Poppy Smith underwent a…
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.
