Supporting Rare Disease Week in Action
At 10 Little Rules, rare diseases are personal. Wendy Price, author of 10 Little Rules of Hank, lives with the reality of rare disease in her family every day, every hour, sometimes even minute by minute.
That’s why we’re supporting Rare Disease Week, a chance for you and me and anybody else who cares to lobby their Congresspeople and ask them to support the rare disease community.
For us, and for so many families we’ve connected with, it’s personal. Hank was diagnosed with eosinophilic esophagitis (EoE) when he was just a babe. Now 8, Hank is a non-stop engine of enthusiasm, wit, trouble … and yes, EoE. He hasn’t been “cured,” but he currently is in remission.
Hank’s our hero.
Now you can be a hero too. Please contact your elected officials during Rare Disease Week (February 25-29) and encourage them to support the important work to be done; you can use the link on the RDLA website.
You can also visit CURED (Campaign Urging Research for Eosinophilic Disease) national nonprofit help raise funds to research for a cure. Hank’s book is featured on their website, and all their profits are donated to a cure.
Please do it for Hank and the rest of the kids like him who struggle with EoE, or do it on behalf of someone you know who is maybe battling a different rare disease. We are all in this together. It could be any of us.
Thanks for supporting this effort. From the bottom of our 10 Little Rules hearts.