Tomorrow, February 28th will be the tenth International Rare Disease Day coordinated by Eurordis . Since 2008 on the last day of February organizations from countries and regions all over the world hold activities designed to raise awareness on rare diseases and the struggles patient’s/families face.
WHAT IS RARE DISEASE DAY?
The main objective of rare disease day is to raise awareness amongst the general public and decision makers about rare diseases and their impact on patient’s lives.
The campaign targets the general public to raise awareness while also seeking to grab the attention of policy makers, public authorities, researchers and industry representatives etc.
WHAT IS A RARE DISEASE?
Definition: Any disorder that affects a small percentage of the population is considered a Rare Disease. The definition varies in different countries.
United States: affects fewer than 200,00 people
European Union: affects fewer than 1 in 2,000 people
Prevalence: Up to 7,000 different types of rare diseases
25-30 million Americans live with a rare disease
80% of rare diseases have identified genetic origins while others are the result of infections, allergies and environmental causes, or a degenerative and proliferative.
50% of rare diseases affect children.
COMMON PROBLEMS FACED:
Due to the broad diversity of disorders and common symptoms which can hide underlying rare diseases, initial misdiagnosis is common.
The lack of scientific knowledge and quality information on the disease often result in a delayed diagnosis.
HOW THINGS CAN CHANGE:
Rare Disease Day is a superb example of how progress continues to be made, with events to raise awareness being held worldwide each year.
Significant gains continue to be made with the increase of international cooperation in the field of clinical and scientific research as well as the sharing of scientific knowledge about all rare diseases (not just recurrent ones). Both of these advances have led to the development of new diagnostic and therapeutic procedures.
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