Posted in Must Reads!

Rare Disease Day Awareness

Tomorrow, February 28, 2017 is World Rare Disease Day. It’s a day to raise awareness of all rare and undiagnosed diseases. Rare Disease awareness is important since with more awareness there can be more treatment options available. For the 4th year in a row, we at Hope Alive Ministry (dedicated towards supporting everyone, but primarily families facing life-threatening & chronic illnesses) are hosting our own Rare Disease Day online event to remember the fighters we lost to rare diseases and undiagnosed ones as well. This year’s slogan is “With research, possibilities are limitless.” To participate in our event, you must have a Facebook account since the event takes place on Facebook.

Here is a run down of the day:

10 AM-11:30 AM EST: Share one fact about a rare disease that you know. Facts must be respectable. We will post something at 10 AM that says: “Post one fact about a rare disease in a comment below this post or on the event wall. Facts must be respectable.”

12-1:30 PM EST: Share pictures to raise awareness of rare diseases and undiagnosed diseases. Pics must be respectful. We’ll post something at 12 PM that says: “Post pictures to raise awareness of rare and undiagnosed diseases in a comment below this post or on the event wall. Pics must be respectable.”

2 PM-3:30 PM EST: Share a song that is about “fighting” or being strong. No swear words or inappropriate words in the song. At 2 PM, We’ll post: Post songs that is about “fighting” or being strong on the event’s wall. The song must not have any swear words in it or inappropriate words.

4 PM-4:30 PM EST: Share an acrostic poem with the word you think of when you think of a child fighting a “rare” disease. The words must be respectable. We will post an example. At 4 PM we will post: “Share an acrostic poem about a child battling a “rare” disease on the event’s wall. Words must be respectable.”

5 PM EST-7 PM EST: Share first names of children you know personally or followed on either Facebook or Caringbridge who have passed away due to a rare or undiagnosed disease with their diagnosis if they had one and age at passing. At 5 PM, we will post something like: “Share first names of children you know personally or followed on either Facebook or Caringbridge who have passed away due to a rare or undiagnosed disease with their diagnosis if they had one and age at passing on the event’s wall or in a comment below this post. If you have permission from the family, you may share a picture of the child who passed away.

8 PM EST-9 PM EST: Giveaway – We will be posting items that rare disease organizations have donated to us to giveaway such as t-shirts, bracelets, bags, etc. as well as items parents of warriors battling a rare disease donated for their warrior and Hope Alive Ministry t-shirts as well. At 8 PM, we will post something like: “Starting now, you may start commenting on items we posted in an album that rare disease organizations have donated to us to giveaway such as t-shirts, bracelets, bags, etc. as well as items parents of warriors battling a rare disease donated for their warrior and Hope Alive Ministry t-shirts as well. If you want any of the items posted, please “Like” the item, comment why rare disease awareness is important to you, and share the item – You must make sure your settings on Facebook is set to public, so we can see that you shared it. Depending on how many items, we will choose the number of winners – For example, there might be 5 of one item, so we will choose 5 winners randomly. The winner (s) will be chosen randomly and the giveaway is opened to anyone across the world.

We will share pages of children battling rare and undiagnosed diseases as well as a Rare Disease Day Slideshow we made in between the events.

*The items for the giveaway will be posted a few days before our event starts on Tuesday, February 28, but comments will be closed until 8 PM ET on that day.

This event is online right on this event page.

Let’s raise awareness!

Join Hope Alive Ministry at: www.facebook.com/HopeAliveMinistry if you didn’t already join us. Since this event is online, everyone around the world can participate. However, the times listed are Eastern Standard Time, so please check your local Time Zone for your time.

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One thought on “Rare Disease Day Awareness

  1. Thank you for you unwavering commitment to raise awareness of rare diseases and how children suffer most from these illness we understand least .

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