Rare Disease Day – Awareness and Action

I don’t always put a lot of stock in awareness “days” or limited awareness campaigns. I used to want to participate in every single one – somewhere along the line I lost a little of my passion.

So I am excited about Rare Disease Day not because it’s ONE day of awareness and, hopefully, action; I am more excited because it’s the START of awareness for so many people. It’s a chance.

For so many families living with rare disorders, a day of awareness is a way to mobilize our educational efforts, to be open and proud about the rare condition our kids have. When we limit our awareness and advocacy efforts to a given day or period of time, what do we do the rest of the time?

We’re still living with the rare disease, or helping a loved one do so.

Taking Action for Rare Disease Day (and beyond) This Year

So, you probably are hearing a lot more about different rare diseases because so many people are coming forward to talk about the condition they have … instead of sharing and caring that information on just today, here are some ways to consider using what you’ve learned:

• Make a point to connect with the Facebook Page or Twitter account of a group or person advocating for a specific disease – and commit to sharing their information throughout the year.
• Consider finding a local family dealing with a rare condition and see if you can’t find some way to help them today – show them that you care in an easy way by dropping off an “I’m thinking of you” card – with a little “How can I help you” note attached … they might not take advantage but I guarantee you’ll have touched them by caring.
• Drop a quick “how are you doing” message to someone on Facebook, Twitter, or another social network when you know they are dealing with rare disorders – the simple act of showing that you care will mean a lot to them!
• Leave a comment with your best suggestion!

Also available – Rare Disease Awareness Graphic Set

I know it’s hard to find original images so I put together a great set of images and invite you to use any of them, share them, pin them, and otherwise spread the word! You can also download the full set by clicking on the last image!