Thanks Heidi..I really appreciate all of your posts and resources across the globe!Solidarity
is the focus this year..alone we are rare, but together we are strong! I think awareness is so important. As the site says.."Rare Disease Day is about realizing the similarities among all individuals impacted by these rare diseases. By working together we can raise awareness and create a global impact".
There are so many ways to get involved..there really seems to be something for all levels of functioning. I have been drafting a letter to the editor for my local paper, and also plan to write my state representatives. The rarediseaseday.us site does provide templates, so at least you have a starting point. Most local papers have an option to submit a letter to the editor online now, and the raredisease.us site has direct link for contacting your representatives.
I think Handprints Across America
is probably the easiest way to get involved..you just download the logo, take a picture, and send it. I don't have Facebook or Twitter, so I have no idea how those pages look, but the site gallery is really sad.. I'd really like to see it filled! Maybe we could include I Have IIH
in our photos
. They also have Visions of Solidarity
for people who may have more energy or creativity.. they're asking for short stories, crafts, pictures interpreting "rare but strong together". There are other options too, but those were a few I thought can be done from computer or home.
Of course my enthusiasm is better than my stamina, so I'm just in the beginning stages myself. I really do believe that together we are stronger, so I hope we can all find a way to bring awareness to this day!
Thanks for your help!