Jeff was first diagnosed with systemic mastocytosis early in life, at age 16. The first sign that Jeff knew that something was off was when he developed urticaria pigmentosa, abnormal…
Angela Singletary is the proud mother of three children: Aidan, DL, and Angela. One of them sticks out from the rest - literally. DL is a foot and a half…
ABC News recently featured an article about Isabella Cristobal and Sergio Soto. They decided to get married shortly after learning that Sergio’s cancer had spread and he had only…
My daughter, Carson, was born in June 2020. I received a call 1.5 weeks later about Carson’s abnormal newborn screening. I was told it was most likely an error, but…
Written by Gina Baker This year Global Mitochondrial Disease Awareness week is September 19-25, but my family and I will continue to fight this battle for the rest of…
Namrah and Aslan Jalil, residents of Islamabad in Pakistan, recently interviewed with VICE World News describing their struggle to arrange for their four-year-old son, Aslan, to be brought to…
According to a story from News Nation USA, eight-year-old Lilly-Ann Woolliss of Immingham was diagnosed with phenylketonuria (PKU) when she was born. As a result, she must consume a diet…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
Breast cancer is a result of a cell in the breast mutating and multiplying rapidly. There are over 275,000 occurrences of breast cancer in the U.S. each year. However, new…
According to a recent article from CoventryLive, the nonprofit Meningitis Now is warning students and those going back to work to not make assumptions when they become ill. Students…
When Alison was just nine months old, she was diagnosed with a mild case of cerebral palsy. To this day, she and her doctors still aren’t certain if that's what…
According to YAHOO News, twenty-two-month-old Devdan has a rare disease called type 2 spinal muscular atrophy (SMA2) which affects nerve cells that control muscles. If left untreated progressive muscle weakness…
As parents, we know our son, now fourteen, the best. And my husband and I had expected that at school, they could get to know him well too. We hoped…
In a story posted on msn.com, primary biliary cholangitis patient Cathy Mumford talks about why she feels it is important for patients living with a rare disease to participate in…
Written by Venus Loreto In 2011 and 2016 I lost two children who were both 2 days old. My baby boy who was born in 2011 had an onset of…
Guadalupe Hayes-Mota has worked for Biogen, Ultragenyx, Amgen, and GSK. He was the prior UCLA Health Director. Additionally, he is a member of the Massachusetts Rare Disease Advisory Council. He…
When organizations partner together to work towards improving patient outcomes, it can also help to increase the understanding and spur research of certain conditions. According to Healio, a recent…
As many people within the rare disease or chronic illness community know, having support is crucial and important. Being able to find support means that you find others with…
The month of August is recognized as Spinal Muscular Atrophy (SMA) Awareness Month. This is a time of year in which the community works hard to spread awareness about this…
Written by Dawn Laney, MS, CDC, CCRC The journey to a Fabry disease diagnosis is rarely a clear, straight path. Fabry can mimic more common health issues and lead patients…
As many people know, writing a book is a huge accomplishment - and one that many people wish to achieve throughout their lifetime. For Samantha VanAlstyne ("Sam"), a 25-year-old who initially…
The month of August is recognized as Stevens-Johnson Syndrome Awareness Month. The goal of this event is to elevate awareness about Stevens-Johnson syndrome among the general public and in the…
Huafrid Billimoria is a 25-year-old triathlete in India. He has just become the first person diagnosed with cervical dystonia in the country to complete a 42km marathon. In 2019 he…
According to a story from MSN, mother Vanessa Ruiz is facing a terrifying choice: feed her family or pay for the genetic testing to confirm that her children Faith and…
Written by: Ashley Walker Like many couples, my husband Johnny and I felt that the birth of our twin sons would mark the beginning of our family’s story. We certainly…
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