Editor’s Note: This story was submitted to Patient Worthy by Roger Templeman, Executive Director of Stabilize Revitalize Fort Pierce (SRFP), a grassroots nonprofit in Fort
For decades, patients diagnosed with IgA nephropathyβan autoimmune condition where trapped immune complexes inflame and damage the kidneyβs filtering units (glomeruli)βfaced a discouraging outlook. Typically
As reported on BioSpace, AstraZeneca has entered a major artificial intelligence-focused research collaboration with biotechnology company insitro, committing up to $1.5 billion in potential payments
Cancelleriβs son, Levi, was diagnosed with Alexander disease as a baby. Above, he smiles widely, wearing the shirt his dad made. Photo courtesy of Tom
Editor’s Note: This story was shared with Patient Worthy by our friends at Elephants & Tea. The article, originally written by Kimberly Oliver, can be
The international study will examine whether MTX325 affects processes linked to Parkinsonβs disease, as well as assess its safety and tolerability. As reported in a
As reported on Yahoo! News, Bristol Myers Squibb (BMS) has received an expanded approval from the US Food and Drug Administration (FDA) for Camzyos (mavacamten),
The Ebola outbreak in DR Congo was declared in May 2026. As reported in BBC News, authorities in DR Congo recently confirmed that the virus
CAPS, or Cryopyrin-Associated Periodic Syndromes, is a group of rare autoinflammatory diseases caused by a genetic mutation affecting the cryopyrin protein, leading to increased inflammation.
Editor’s Note: This story was originally written by Anne Denneen, and shared on Caring Bridge. So many things happen in life that you donβt even
Nota del editor: Para Patient Worthy es un honor compartir este artΓculo, que nos fue enviado originalmente por AndrΓ©s Contreras. La colangitis biliar primaria (PBC)
Editor’s Note: Patient Worthy is honored to share this article, originally submitted to us by Andres Contreras. Primary biliary cholangitis (PBC) is a long-term liver
Editor’s Note: Patient Worthy is honored to bring you this article, shared with us by our friends at Rareatives. Originally written by Davi Jacobs, the
Diagnosis and year of diagnosis I was diagnosed with epilepsy in 2000, and I have been living with epilepsy for more than 26 years. My
Sixteen years ago, when my daughter was diagnosed with a rare autoimmune disease, I knew I was scared. I knew I was overwhelmed. I knew
At just two years old, Asher is already teaching us that the smallest milestones can be the biggest victories. Our son, Asher, was born on
When there is no treatment for your child’s rare disease, how do you find a way forward? For one mother in the Czech Republic, the
A Chicago cancer conference this summer revealed an astounding development β a recent clinical trial of a new therapy, Daraxonrasib, was nearly doubling survival rates
Feeling sleepy isn't always the same as being tired. For some people, excessive drowsiness can interfere with concentration, work, social activities, and the ability to stay alert throughout the day. Somnolence may be associated with certain medical conditions, medications, or sleep disorders. Raising awareness of symptoms like somnolence helps highlight how changes in alertness can affect daily functioning and overall quality of life.
#rarewordoftheweek #RareDisease #rarediseaseawareness #PatientWorthy
Today we would like to spotlight Travis, a male breast cancer survivor, advocate, award winning hairstylist and owner of Resilience Beauty Box. If you'd like to share your cancer journey and inspire others, click here: bit.ly/4bG3Yq4#shareyourstory #malebreastcancer #Cancer #PatientWorthy #WHATNEXT
Raising awareness starts with understanding. π PTEN Hamartoma Tumor Syndrome (PHTS) is a rare genetic condition associated with the development of hamartomas and an increased risk of certain cancers. Greater awareness can help encourage early diagnosis, appropriate screening, and ongoing support for individuals and families affected by PHTS.
Today, we stand together to amplify awareness, support the PHTS community, and remind everyone that every rare condition deserves recognition, research, and understanding. π
More awareness. More support. Better outcomes.
#PTENHamartomaTumorSyndrome #phtsawareness #PatientWorthy
Β© Copyright 2024 Patient Worthy
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.
