Most people diagnosed with ovarian cancer suffer from recurrences after treatment. And every one of them means less and less treatment options. It’s a disheartening, never-ending cycle. What has stumped…
The First Ever Seattle Rare Disease Fair happened on June 3rd, 2017. And it was a BLOOMING success. The goal of the event was to spread awareness of rare disease…
Hemiplegia normally occurs during pregnancy, or very quickly after birth. Parents are lucky to get a few moments with their child before this condition changes all of their lives forever.…
New information about rare diseases is always being discovered. As new symptoms are documented from patients and new research is developed, there’s a good amount of data that needs to…
When you hear your newborn's been diagnosed with a rare disease, you may feel like you have to become a scientist in order to raise them. Parenting a child without…
Paige Hildring is nine years old. She’s one of 108 people in the entire world with PURA Syndrome. PURA Syndrome is a neurodevelopmental disorder and those who suffer from it…
A new way of looking at an old idea--sometimes it’s all you need for innovation. A change in perspective can have such a big effect on a study’s progress, especially…
The HCU Network of America is not only trying to spread awareness and encourage research for homocystinuria, they were founded to serve as a resource for those currently living with…
In support of Dravet syndrome, Annabel Hughes and her son Henry, will be climbing Ben Nevis on June 17—Britain’s tallest mountain. The Hughes family has been directly affected by this…
A year after 4-year-old Lyla was diagnosed with microscopic polyangiitis (MPA) in 2015, the disease became so advanced that she was placed on dialysis for 12 hours a day. Her…
When you have a bleeding disorder, you have to be careful doing everyday tasks. It changes your normal routine. It changes your life. For Malaika, her diagnosis of hypoprothrombinemia took…
Have you ever heard of “ex vivo” gene therapy? If you haven't, it means removing some cells, modifying them, and putting them back in. The goal? Curing the diseases that…
The Neurodegeneration with Brain Iron Accumulation (NBIA) Disorders Association was established in 1996 to serve and support all those affected by PKAN, PLAN, MPAN, BPAN, and CoPAN. Of these, PKAN or…
The Transverse Myelitis Association is a nonprofit founded by individuals whose passion for advocating for the disorder is deep-seated. All five of the families who have worked to establish it…
Recently diagnosed with a rare disease and don’t know where to turn for more information? Have a loved one with a rare disease and struggling to understand the science behind…
Primary Immunodeficiency (PI) can be very hard to explain to people and very hard to understand. The thing is, most of the time we look healthy on the outside. But…
“Knowledge is Hope” is the motto of the Mesothelioma Applied Research Foundation and it could not be more true. While mesothelioma can be a terrifying diagnosis, researchers have made great…
Ehlers-Danlos syndrome (EDS) is incredibly diverse in its symptoms, and most of the time patients don’t have all of them at the same time. Additionally, it’s a spectrum condition so…
I know, we’ve all heard it a million times before. A good night’s sleep is essential for optimal health. However, as much as we love sleep, it’s easy to get…
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,…
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…
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…
Scientists aren’t always the best at sharing amongst themselves. But sharing data could mean accelerated research. By making your own data available to scientists you can help contribute to a…
Chances are if you have a primary immunodeficiency disorder, you don’t live near other teens with your same diagnosis. No one else gets what you’re going through. You may have…
Medicine is expensive. Most patients aren’t millionaires. It’s disheartening that treatments which could be so beneficial are out of reach for so many. It’s even more disheartening when their production…
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