Jennifer’s Story: More than a WHIM – Important Lessons from My Diagnostic Journey
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
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
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
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
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
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
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
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
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
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
From Patient Worthy’s friends at the Platelet Disorder Support Association comes a post about a patient’s experience with Immune Thrombocytopenic Purpura (ITP) and a walk
Heal Canada is a non-profit dedicated to “patient advocacy, education and collaboration among patient advocacy groups and other healthcare stakeholders.” As part of their extensive
According to a story from Forbes, Joe Rogan’s hit podcast “The Joe Rogan Experience,” which is the most popular podcast on Spotify and commands an
In the roulette wheel of rare genetic diseases, there are many heart-breaking conditions. GM1 gangliosidosis, Tay-Sachs disease, and Neimann-Pick disease are three of the rare
The dynamic superhero action series ‘The Boys’ has received a lot of attention for its graphic violence, iconic characters, and commentary on US political culture.
It is widely known that millions of individuals are living with diseases associated with chronic inflammation. In a recent interview with BioSpace, Alan Watt, President
The COURSE Phase IIa clinical trial was conducted to evaluate tezepelumab (marketed as TEZSPIRE) in people living with chronic obstructive pulmonary disease (COPD) that had
In this episode of the podcast, patient advocate Ashley Point discusses Koolen-de-Vries Syndrome (KdVS) and her son, Davis, who was diagnosed in 2016: bit.ly/3TWsqgl Koolen-de Vries Syndrome Foundation ... See MoreSee Less
Bust some myths this #FactFriday! Join us as we debunk 5 common misconceptions about ADHD in honor of ADHD Awareness Month. Got a story to share? We're all ears: bit.ly/3VuxFDV
#adhd #ADHDAwarenessMonth #PatientWorthy #shareyourstory
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