February 28, 2015 marks the eighth annual Rare Disease Day, but don’t let the name “rare disease” fool you. Twenty-five million Americans live with a rare disease, which is defined as any disease that affects less than 200,000 people. The goal of this day is to raise awareness for the millions of people living with a rare disease in the hopes of creating connections between patients, families, caregivers, organizations, and support groups worldwide.
Over 6,000 rare diseases have been identified globally, and the complexity of these diseases makes it increasingly difficult to find appropriate treatment and services. That’s where family and friends come in. They become the primary source of care and support for their loved ones. They even become medical experts for the condition, often knowing more than professionals!
The international theme of 2015’s Rare Disease Day is “Living with a Rare Disease” with the slogan of “Day-by-Day, Hand-in-Hand”. This theme focuses on the families, friends, and caregivers whose daily lives are impacted by rare diseases and who are living day-by-day, hand-in-hand alongside individuals with rare disease. Whether they are providing direct medical care, advocating for patients, or being a pillar of support, this day celebrates them all.
Though rare diseases present with different symptoms, they impact the lives of individuals and families in similar ways. They all involve daily learning for patients and their families. With rare diseases, where information is scarce, patient organizations play a key role in providing resources and support that are crucial to managing the challenges that living with a rare disease may involve.
February 28th is a day to send a message to the world to unite those whose lives have been impacted by a rare disease and to inspire a better patient experience by creating stronger support and advocacy groups worldwide.