Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
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…
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),…
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. …
“I spent the majority of my life fearing the weight of VHL will eventually crush me, but thanks to this drug trial, not only do the rest of my fellow…
Medscape Medical News reports that results have been received from the OCCLURANDOM Phase 2 trial which is the first randomized trial investigating the antitumor effect of the peptide receptor radionuclide…
Are there therapeutic options for patients living with unresectable (inoperable) pancreatic cancer? According to an article in MedScape, researchers sought to understand whether sunitinib or a combination of peptide receptor…
In the United States, the FDA grants Orphan Drug designation to drugs or biologics intended to prevent, diagnose, or treat rare conditions. These are conditions affecting fewer than 200,000 Americans.…
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