When she was an infant, Phoenix Radziwon was diagnosed with Down syndrome. However, her family has — over more recent years — learned that her Down syndrome diagnosis may go…
Despite medical advances and new therapeutic developments, hepatocellular carcinoma (HCC) remains difficult to treat; in part, this is due to the fact that HCC, like many liver cancers, is often…
According to a story from the Rancho Santa Fe Review, 26-year-old Tyler Schutz began taking the sport of golf by storm last year. The young man made the Double Eagle…
If there is one lesson that Jennifer embodies in full, it’s this: always live life to your fullest. That’s what Jennifer aims to do every day. As an education consultant,…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
The American Hematology Society (ASH) held its 64th Annual Meeting in December 2022. During the Meeting, a variety of stakeholders—including physicians, researchers, and industry members—gathered to discuss research, trends, and…
James Clarke, now 42 years old, has always loved sports. He watched as Doddie Weir, a Scottish rugby union player, tirelessly worked to raise motor neuron disease (MND) awareness. Doddie…
According to a story from the East Bay Times, it was 2003 when Isabel Bueso and her family traveled to the US from Guatemala. She was just eight years old,…
In the European Union (EU), Orphan designation, or Orphan Medicinal Product designation, is granted to drugs or biologics intending to treat, diagnose, or prevent a rare, chronically debilitating, or…
In March 2022, T. Kavinraj began experiencing a number of worrying health symptoms. He had a splitting headache and could not stop vomiting. In fact, his condition was so bad…
In the United States, the Food and Drug Administration (FDA) grants Orphan Drug designation to drugs or biologics which intend to treat, diagnose, or prevent rare conditions. “Rare” conditions are…
Ten years ago, a biochemist was seeking investors for her new company that was developing mitochondrial-based medicines. The Israeli-born embryologist observed how the blending of mitochondria from one egg…
This year, the 13th annual Moebius Syndrome Awareness Day (MSAD) will take place on Tuesday, January 24. Moebius Syndrome Awareness Day, as the name suggests, is an event to celebrate…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
The American Society of Hematology (ASH) held its 64th Annual Meeting from December 10-13, 2022. During the meeting, doctors, researchers, and other stakeholders within the hematology sphere came together to…
In multiple disease states, early identification, diagnosis, and treatment can significantly improve overall survival rate and patient outcomes. This is especially true for lip and oral cavity cancer. According to…
Have you ever heard of misophonia? This rare disorder, which literally translates to “hatred of sound,” occurs when certain sounds trigger intense and involuntary emotional and physiological reactions. When people…
Singer Celine Dion recently acknowledged that she has an extremely rare neurological disorder called stiff person syndrome (SPS). According to a recent article in The Metro, the disease occurs…
According to a story from The Post and Courier, Chantel Bass and her family have been living in the shadow of a rare immune illness called chronic granulomatous disease (CGD).…
New Delhi: Recent headlines in the Hindustan Times highlighted a letter written by the leader of the Bharatiya Janata Party, Varnum Gandhi, to Health Minister Mansukh Mandaviya urging him…
Ashley Colburn began losing her vision in childhood and became completely blind at fourteen years old. You see, Ashley has a rare inherited disorder called von Hippel-Landau syndrome (VHL),…
Sabiha Aoudia and Atmane Abbas were visiting the United States from Algeria when, suddenly, Aoudia began experiencing some pregnancy complications. She underwent an emergency C-section and Alice, the couple's…
Before you read on, don't forget to check out Part 1 of our interview. In Part 1, Dr. Raghavan discussed his background, explained what lupus is, and introduced some of the findings…
After Tabitha Wright heard the news from the doctor, her heart dropped. Her daughter Aspen had just been diagnosed with spinal muscular atrophy (SMA) type 1, a rare genetic…
On January 6, 2023, the FDA granted conditional approval to a new Alzheimer’s drug, lecanemab, that will be sold as Leqembi. Vox carried the original story and included an…
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