An article over at Genetic Engineering & Biotechnology News reports that Pfizer has withdrawn its sickle cell disease medication Oxbryta after the European Medicines Agency (EMA) disclosed the deaths of…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…
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 to raise awareness about the…
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 offerings of support for patients…
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 enormous following, has been no…
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 lysosomal diseases that have devastating…
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. But it also depicts Black…
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 of NodThera, said the goal…
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 a wide range of blood…
Jenny, a 40-year-old nurse with Charcot-Marie-Tooth disease, began her solo voyage from Hawaii with her 6-pound Maltese dog named Romeo aboard in April 2023. She arrived in Fiji on or…
Did you know that World Duchenne Day is recognized each year on September 7th? This day is dedicated to spreading awareness about Duchenne muscular dystrophy (DMD), a rare disease. Patient…
Written by George Simpson Despite nagging inflation and economic uncertainty (which could include “Will my company make layoffs in the next year? or “Will my landlord up my rent again?”)…
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