_{Rare Disease Day USA}

From the Rare Disease Day website

Quote :

As part of Rare Disease Day, we would like to take the opportunity to reach out to Congressional Representatives to educate them about rare diseases, but we need your help! Every voice is important in this process and together we can make our voices heard. If legislators are more informed on the issues they will be able to make better decisions for the constituents they serve.

Influencing public policy to promote political and/or social change is a civic duty. The one constant we all must remember is that legislators have to get re-elected and they pay close attention to the views and opinions of their constituents. Remember, NORD and our partner organizations do not vote, but you do. The ultimate authority of the U. S. Congress to act resides in individual voters, not in institutions.

Visit Rare Disease Day for the tools to participate and help.

There are nearly 30 million Americans living with rare diseases. We want to see you and how Rare Disease Day is spreading across the United States. Go to Handprints Across America for more information.

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!
Julie

I've found more options for getting involved..The Global Genes Project has a facebook project called "1 Million for RARE". They're trying to build a community of 1 million supporters for the families and friends affected by rare disease. You can go to https://www.facebook.com/globalgenesproject?sk=app_208412272531040 to like the page and join the cause. You can also go to http://rarediseaseday.us/raise-your-hand/ and "Raise Your Hand" for rare disease. In this campaign you click the banner and Lundbeck (R&D company for disorders of cns) will donate $1 to National Organization for Rare Diseases.

For those of you interested in policy and legislation, you can write your representatives to encourage their participation in the Rare Disease Caucus and other initiatives. There are several current initiatives involving everything from getting off label uses for medications covered by insurance to removing the waiting period for social security benefits. Rare Disease Legislative Advocates have information regarding current issues and have letters available regarding each issue at http://www.congressweb.com/cweb2/index.cfm/siteid/kaki. They give you an opportunity to input your personal information and link to each issue, then send you a copy of letter submitted on your behalf..yes, you can view and edit the letter prior to submitting it. NORD also has good information about the pro's and con's of some of these issues at http://www.rarediseases.org/advocacy/initiatives-updates. They also provide you with information on how to write your representatives, but don't have a template in place.

Thanks again for your involvement!