Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.
A few years ago, Dean Mooney began experiencing some troubling health symptoms. His left hand became stiff and sometimes difficult to use. Later, he developed a mild arm tremor. After…
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…
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,…
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…
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…
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…
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…
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…
It’s no secret that the COVID-19 pandemic significantly changed the way we interact with the world around us: in our social lives, the way we work, the way we communicate,…
In 2021, the U.S. Food and Drug Administration (FDA) approved zanubrutinib (Brukinsa) for adult patients with relapsed or refractory (R/R) marginal zone lymphoma. At the 64th Annual American Society for…
In the United States, Fast Track is the process designed to facilitate the development, and speed up the review, of therapies designed to fill an unmet need or treat…
Before you read on, make sure to check out: Part 1: Green Bay Packers' Shemar Jean-Charles and Los Angeles Chargers' Storm Norton talk about the importance of Alzheimer's disease awareness. …
Over thirteen years ago, Josh McGuigan met his wife Stephanie – and the rest was history. In the time since, the couple has gotten married and created a beautiful life…
Initially, when doctors in Malaysia met with the 21-year-old patient, they suspected that he had mandibuloacral dysplasia. The man, 21 years old, was short in stature (3.8 ft tall)…
In early January 2023, Healio reported that IOA-244, a treatment designed for uveal melanoma, was granted Orphan Drug designation by the U.S. Food and Drug Administration (FDA). Orphan Drug…
Orphan Drug designation is granted by the FDA to drugs or biologics intended to treat, diagnose, or prevent a rare disease or condition. “Rare,” in the United States, is…
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