International Rare Disease Day: Get Involved and Lend a Helping Hand

Rare Disease Day

Raising awareness since 2008

Today, February 29th, is marked as the fifth International Rare Disease Day. Coordinated by EURORDIS and in collaboration with rare disease national alliances in 25 European countries, patient organisations from all over the globe will be organising activities under the slogan “Rare but strong together” throughout the day.

Focusing mainly on gaining solidarity for the noble cause of helping people with rare diseases, activities will take place, among other, across Europe, Russia, China, Japan, the USA, Canada, Australia and New Zealand.

InTech’s employees supported the project by getting solidarity Bracelets for Hope with the slogan “Rare but stronger” at the Croatian Alliance for Rare Diseases stand in InTech’s headquarters city of Rijeka. The bracelets were given away for free.

To get involved yourselves  please refer to the official homepage for the Rare Disease Day. You will find many simple and free suggestions how to help the cause and raise awareness within your own community.

                                  Rare diseases supporting bracelets

Rare diseases are disorders affecting less than a certain percentage of the whole population of a country. The percentage is defined differently from country to country, for example in the USA, if less than 200,000 patients suffer from a disorder, it can be classified as a rare disease; on the contrary, in Japan, less than 50,000 patients suffering from the same disease are charaterised as a rare disease patients. Among other:

  • Over 350 million people worldwide have rare diseases
  • 80% of rare diseases are genetic in origin
  • 75% of rare diseases affect children
  • 30% of children with rare disease will not live to see their 5th birthday
  • Rare diseases are responsible for 35% of deaths in the first year of life
  • There are more than 6,000 different types of rare disease

The diseases may be rare, but hope should not be, therefore support the Rare Disease Day by choosing to talk about it to your own peers as we do.

Sources:

http://www.rarediseaseday.org/

http://rareproject.org/

About Ana Nodilo

pr online manager at InTech
This entry was posted in InTech, This Week in Science, Uncategorized and tagged , , . Bookmark the permalink.

One Response to International Rare Disease Day: Get Involved and Lend a Helping Hand

  1. Thanks for writing about rare diseases. As a mother of a child with a rare disease called Fanconi Anemia, I appreciate this post!

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