Share Your Child’s Rare Disease Story to Be Featured in Slideshow!

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 Monday, February 29. 

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 with the subject line “Rare Diseases Slideshow”:

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

2. 1-2 pictures of the child 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, Monday, February 29, 2016. 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 Thursday, February 26 at 11:55 PM Eastern Standard Time (EST). We will reply to each email as soon as we receive it. Let us raise awareness of rare diseases together and remember you all have a voice!


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