The month of November is recognized as Mouth Cancer Action Month. Supported by the Oral Health Foundation and the Mouth Cancer Foundation, this is a time to help advocate and…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Strokes, traumatic brain injuries, amyotrophic lateral sclerosis, Alzheimer's disease, and multiple sclerosis all share something in common: they all have profound effects on the brain and its function. They can…
We are excited to announce that Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back with a new episode. This week, Colby is…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
Jenna Cohen was 20 weeks pregnant when a scan revealed a significant developmental abnormality in her future child: the absence of the fibula. The fibula, or calf bone, is found…
November 10 is recognized as World Neuroendocrine Tumor (NET) Cancer Day, a time to spread awareness about neuroendocrine tumors, a group of rare cancers, among the medical field and in…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
On October 24, 2023, the Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. These webinars help provide updates to the rare disease community on legislation and other policy initiatives…
A podcast titled Tasty Morsels of Critical Care, from Emergency Medicine Ireland, focused on hepatorenal syndrome in its 73rd episode. Typically, hepatorenal syndrome is an indicator of serious kidney damage, and…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
The month of November is recognized around the world as Lung Cancer Awareness Month, a time to advocate and spread awareness about lung cancer. This form of cancer is not…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
According to a report from Healio, a recent study evaluated the impact of diabetes on people living with multiple myeloma, a rare form of hematological cancer. The study indicated that…
According to a story from Healio, 21 people living with the disease prurigo nodularis took part in a qualitative study over the phone in which they shared the ways in…
According to a story from Medical Xpress, a recent study found that pelvic floor muscle training provided no additional advantage over bladder training in women with symptoms of overactive bladder.…
Patient Worthy is expanding its platform for sharing patient stories through the production of short-form videos featuring rare disease patients. Recently, we sat down with Margaret, who lives with metastatic…
We are excited to announce that Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back in action with a new episode. Colby and…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
From September 19-21, 2023, the Global Genes RARE Advocacy Summit was held in San Diego, CA. This event is a yearly convergence for rare disease stakeholders with a special emphasis…
According to a story from Healio, the investigational therapy sotatercept has been given Priority Review status from the US Food and Drug Administration (FDA). The therapy is in development as…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Patient Worthy partner Alex TLC has announced that, in a large-scale newborn screening study supported by the UK's NHS and Genomics England, adrenoleukodystrophy (ALD) and metachromatic leukodystrophy (MLD) will be…
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.
