Written by Kevin Alexander, Storyteller, Musician, PKU Advocate, Podcaster “I’m not trying to live a ‘normal’ life. Normal is overrated. I’m trying to live my life.” I had that…
In recognition of Breast Cancer Awareness Month, we are taking you back to this top episode from last year! Colby and Nia Maya sit down with Jasmine Souers, who is…
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder of Stork Genetics.…
Jessica is coming up on six years of breast cancer survivorship. She speaks to the importance of performing self-exams, the myth that "you're too young to have breast cancer," and…
For over three decades, Neurocrine Biosciences, Inc. has been working to support individuals with neurological, neuroendocrine and neuropsychiatric disorders through the development of breakthrough treatment options. One of the company’s…
According to a press release from GlobeNewswire, the biopharmaceutical company SpringWorks Therapeutics recently announced that the US Food and Drug Administration (FDA) has granted the company's New Drug Application (NDA)…
Researchers discovered a version of the Cas protein that fits into adeno-associated viruses (AAVs). This virus can be engineered to deliver targeted therapy to cells and is a common approach…
According to a story from Axios, 21 cases of Oropouche virus disease have been detected in US citizens returning to the country after spending time in Cuba. As a result,…
Almost 100,000 people in the United States have been diagnosed with sickle cell disease (SCD). About one million people worldwide have the disease. Patients are at risk of death in…
According to a story from Business Wire, the biotechnology company Viridian Therapeutics, Inc., has completed its enrollment goal for its phase 3 clinical trial designated THRIVE-2. This clinical trial will…
According to a story from BioSpace, the biotech company Dianthus Therapeutics recently announced that the US Food and Drug Administration (FDA) has cleared the company's phase 2 clinical trial. This…
Candice's journey with cancer began in 2013 when she discovered a dimple which led to a stage 2 breast cancer diagnosis. In 2021, her battle intensified as the cancer metastasized.…
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 sitting down with Ashley Point, a…
This patient story was contributed by the Marfan Foundation. ### CONTENT WARNING: This patient story focuses on a detailed account of fatal childhood aortic dissection. It is shared to save…
I always schedule my mammograms during October, as it’s Breast Cancer Awareness Month. It’s much easier to remember to get one when every network news anchor is passionately reminding me…
An article over at Genetic Engineering & Biotechnology News reports that Pfizer has withdrawn its sickle cell disease medication Oxbryta after the European Medicines Agency (EMA) disclosed the deaths of…
Written by Jennifer, a patient living with WHIM syndrome. ### I’m in my sixties - but it wasn’t until a decade ago that I learned the name of the rare…
It is estimated that over six million people in the U.S. have Alzheimer’s disease plus millions of other people throughout the world. Alzheimer’s is the most common type of dementia.…
Written by Caleb Browning This story was originally published for MySkinMyStory.org, a website offering young people living with severe atopic dermatitis — also known as eczema — and other skin…
A recent article at BioPharma Dive outlines the findings of a study into Lexeo’s experimental gene therapy. The six participants in the recently conducted interim trial had enlarged hearts associated…
Women who undergo allogeneic hematopoietic cell transplantation (alloHCT) face significant treatment-related challenges regarding fertility. However, science seems to be overcoming many treatment-related fertility challenges after alloHCT and successful pregnancies are…
Written by Virág Hazai, an Ehlers-Danlos Syndrome patient advocate living in Hungary. ### My name is Virág, and I'm a university student with Ehlers-Danlos syndrome (EDS). I would love to…
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder…
September is recognized as Charcot-Marie-Tooth disease (CMT) Awareness Month. Although this illness is one of the most widespread inherited genetic disorders, there is still a significant need to spread awareness…
Patient Worthy is proud to announce its participation in Health Awareness' 2024 Q3 Rare Disease campaign. Health Awareness, which publishes healthcare news, information and personal insight stories for readers in…
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