Rare Disease Day is coming up on February 29, 2016 and we would love to feature families with rare diseases.
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 firstname.lastname@example.org 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. Caringbridge & Facebook page link if they have one.
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 Facebook page and the 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!