Rare Disease Day 2016 – Patient Voice Is Crucial


Rare Disease Day 2016: PATIENT VOICE, is on Monday, February 29th.

This year, Rare Disease Day recognizes the crucial role patients play in voicing their needs and in implementing changes in healthcare, public policy and patient advocacy, that will improve their lives and the lives of their families.

So what is a Rare Disease?
In the US, a rare disease is defined as, “A disease or disorder that affects fewer than 200,000 people, at any given time.”
Currently, there are over 6000 diseases that are characterized as “rare,” all of which have a broad range of symptoms and underlying causes,that can differ from disease to disease, and from patient to patient, making misdiagnosis common and delaying effective, life saving treatments.

Common Problems of Rare Disease.
The challenges facing patients with rare diseases are daunting and at times crippling, emotionally, physically and financially. Although progress is being made, there is still a significant lack of scientific knowledge regarding these diseases. There is a lack of health caregiver awareness and training, on how to engage the patient in the proper diagnosis of these diseases. There is a lack of patient advocacy, fighting for access to appropriate testing and treatments. To make matters worse, the fact that there are often no existing effective cures for these diseases, only adds to their suffering.

So what can you do to get involved?
On Monday, February 29th, there are Rare Disease Day EVENTS taking place across the globe! If there is not an event close to you, visit the RareDiseaseDay.org to discover other ways that you can get involved to help raise awareness among the general public and public policy decision makers. Your involvement will save lives.

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