This is not a warning, but some friendly advice: Start planning for next year and mark your calendar for February 28, 2018—it’s world Rare Disease Day! It’s the day that heightens awareness amongst the public and decision-makers about rare diseases and their impact on patients’ lives.
I think some folks in the UK had the same idea as they organize a blues concert to support the neuromyelitis optica (NMO) community.
Outdoor music and fun to bring awareness of NMO and support to those dealing with the disease—sounds like a great idea to me. Click here to watch the short video clip about this neuromyelitis optica (NMO) event.
So, let’s talk rare diseases and awareness events.
The WHAT
A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.
Rare diseases are characterized by a wide diversity of symptoms and signs that vary not only from disease to disease, but also from patient to patient suffering from the same disease.
The WHY
Promoting rare diseases as a public health priority is an important objective.
It raises awareness among policy makers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.
Food For Thought
Think of the burden of having a medical condition that no one outside of your family understands, perhaps not even the doctor treating you.
You begin to be defined by your rare disease.
The longer it takes to explain, and the more times you have to explain it, the more it becomes part of your identity.
You become the person in the room “with that rare disease no one has ever heard of.”
Such an identity crisis can only but interfere with being a mother, a husband, a student, a member of the church choir, a doctor or whatever you would choose to be defined by.
Isn’t life hard enough already?
