The very first HAE symptom I had brought me to the operating table. Unnecessarily. It was summer, with holidays and grandmother's birthday party- a big family reunion in the garden.…
According to a story from USA Today, Mark Hoppus, bass player for the iconic pop-punk band Blink-182, was recently diagnosed with a rare cancer: diffuse large B-cell lymphoma. His cancer…
The patient sitting in front of this physician was later diagnosed with severe chronic fatigue syndrome (myalgic encephalomyelitis or ME/CFS). But for now, the patient had to endure humiliation…
33 year old Emily Helm from Brandon, Mississippi, had always learned that many of her family members on her father's dealt with bone weakness, joint problems, and pain. It was…
ANGEL AID CARES began as the brainchild of Cristol Barrett O’Loughlin, out of a shared desire to pay tribute to her own family experience and to uplift others in need.…
Ever since I could remember I have had an aptitude for adventure. I like to be on the move, engage in sports and any out door activity and most importantly…
Claire Richmond can be considered a very experienced patient. It took Claire nineteen years to receive a diagnosis for her rare disease. During that time, she had been dismissed…
Do you love golfing? Interested in making a difference for patients with amyotrophic lateral sclerosis (ALS)? If you're located in or around Oceanside, CA, then I have an event…
My nickname is Arti and I'm 11 years old. Because of my HAE diagnosis, I've been suffering from frequent and painful swellings since I was little. My life is divided…
The month of July is recognized as Sarcoma Awareness Month, a time of the year for spreading awareness about sarcoma among the general public and in the medical community. An…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
Mal de débarquement, or "sickness of disembarkment," is a phenomenon which causes a bobbing, rocking, or swaying sensation, alongside other symptoms. With many people, mal de débarquement only lasts…
Patient Worthy signed up to cover several sessions at the Huntington's Disease Society of America's (HDSA) 36th Annual Convention, which was held virtually this year. This event features informative presentations…
HAE Junior’s drawing exhibition unveiled the dreams, wishes, and ambitions of children & teenagers living with hereditary angioedema (HAE). The patient organization HAE Junior organized a drawing exhibition named We…
Hannah Creel was only 18 months old when she was first diagnosed with cystinosis, a rare disorder that affects all organs in the body, in particular the kidneys. Her parents…
When Stephanie Ernst-Milner first discovered that she was having twins, she was speechless. But what she learned over the course of her pregnancy, and in the seven years since, has…
WLNS Brooklyn Michigan is sharing news about Jaxon Meschke, a four-year-old boy with a rare disease called cystinosis. Jaxon’s body has been fighting the disease since he was six…
Ahead of Cystic Fibrosis Week in the UK, 37-year-old Marc Cotterill, who lives with the disease, has given a video presentation to the European Cystic Fibrosis Conference on the theme…
According to a story from the Bognor Regis Observer, 25 year old Kieren Rogers had his first stroke last August. It was a minor event, but he still needed to…
The month of June is recognized as CDKL5 Awareness Month, a time set aside to spread awareness about CDKL5 deficiency disorder among the general public and the medical community. June…
The month of June is recognized as Scleroderma Awareness Month, a time for spreading awareness about the rare disease scleroderma in the medical community and among the general population. This…
According to a story from bbc.com, five month old Arthur was born with the rare disease spinal muscular atrophy (SMA). He is one of the first people in the UK…
The month of June is here and every year it is recognized as Myasthenia Gravis (MG) Awareness Month. This is a time meant to help spread awareness about myasthenia gravis…
Noémie has four wonderful, healthy children. She has made it clear that amyotrophic lateral sclerosis (ALS) is not the end for her and that she values every precious moment…
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