Tag: rare disease
Imagine facing a health issue so elusive that it takes years—even decades—to diagnose. Meanwhile, your work performance suffers, your income dwindles, and your quality of life declines. For millions of… Read More
Imagine being one of only a few hundred people worldwide diagnosed with a condition so rare that even the medical community struggles to understand it. This is the reality for… Read More
Imagine you’re part of a small town where each family has a unique story, each one different from the others. Now, picture that in the medical world. This is the… Read More
Imagine a world where you or a loved one has a condition so rare that doctors struggle to diagnose it, and treatments if they exist, come with sky-high costs. Actually,… Read More
Imagine waking up every day, knowing that your loved one depends entirely on you for their daily needs. For many informal caregivers of people with rare diseases, this is their… Read More