Posted in Must Reads!

Rare Disease Day 2016 – Online Event

Monday, February 29 marks Rare Disease Day once again. On the last day of February every year, there is a Worldwide celebration of Rare Disease Day.

In 2014 and 2015, in celebration of Rare Disease Day, we at Hope Alive Ministry hosted an online event.

This year for the 3rd year in a row, we are hosting a similar event. The event will be conducted online on our Facebook page. You must have a Facebook account to participate. Click here to join. 

Details on the event:
Together we will raise awareness of rare diseases and undiagnosed diseases. This year’s theme is “Patient Voice.” 
The event will be broken up into posting a fact about a rare disease, posting pictures to raise awareness of rare diseases, sharing a song about “fighting” or being strong, sharing an acrostic poem with the word you think of when you think of a child fighting a rare disease, and sharing first names of children who have passed away from a rare or undiagnosed disease including their FB or Caringbridge page if they have one (If you have permission from the family, you can also share a picture of the child).

The event will take place from 11 AM EST-8:30 PM EST and anyone from throughout the world can participate.

We will be posting reminders here as the event gets closer. Let’s raise awareness together! 

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