Posted in Must Reads!

Request for Updated Rare Disease Day Slideshow!

For the 2nd year in a row, we will be making a slideshow  featuring kids from 0-18 with rare diseases as part of our online Rare Disease Day Event on World Rare Disease Day on Tuesday, February 28. 

If you have a child between the ages of 0-18 and they are battling a rare disease (You can still submit if the child has passed away.), please send us the following to hopealiveministry4you@gmail.com with the subject line “Rare Diseases Slideshow 2017”:

1. 1st name of child & initial of last name 

2. 1-2 pictures of the child in .jpg format battling the rare disease

3. Age of child or age they were when they passed away if applicable

4. 1 sentence about why Rare Disease Day is important to you and/or your child. 

5. Diagnosis of child if they have one.

6. Caringbridge & Facebook page link if they have one.

The purpose of this slideshow is to raise awareness of rare diseases and to show support to families battling rare diseases. 

If you give us permission, we will then use this info in a slideshow about rare diseases to be posted on our YouTube channel on Rare Disease Day, Tuesday, February 28, 2017. The video will also be shared onto this blog, our Hope Alive Ministry FB page, and our Facebook event page for our online Rare Disease Day Event. The slideshow will be made public, so everyone can view it.

 If you are interested, we must receive the above information no later than Sunday, February 26 at 11:55 PM Eastern Standard Time (EST). We will reply to each email as soon as we receive it, so you know that we received it. Let us raise awareness of rare diseases together! 

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