Wednesday, January 19, 2011

Rare Disease Congressional Caucus

Below is a message from NORD I'm passing along.

Rare Disease Day Partner

Ask Your Congressional Rep to Join New Rare Disease Caucus

Thank you for signing up as a Rare Disease Day Partner or Ambassador! Here is one of the easiest, but most important, things you can do to support Rare Disease Day 2011:

Write Your Reps Campaign

Many of you know that NORD and its advocacy partners have worked with members of the U.S. Congress to establish a Rare and Neglected Diseases Congressional Caucus and that Congressman Joe Crowley (D-NY) has agreed to co-chair it. The launch of this Caucus was originally announced at the NORD Gala in May. However, because of the November elections and following lame duck session, promotion of the Caucus has been low-key to date.

Now it's time to bump it up a notch. It's time for all of us to urge our Congressional Representatives to join the Caucus. As one of our primary Rare Disease Day 2011 activities, NORD is asking all our Partners and Ambassadors to join us in a Write Your Reps Campaign in support of the Rare and Neglected Diseases Caucus.

How to Do It

Check the list of Caucus members on the NORD website to see if your Representative's name is there. Then click on the following link and enter your zipcode to access an online form that will allow you to send an email directly to your Representative: (This will also allow you to confirm who your current Representative is, if you've forgotten.)

In your email, you should ask your Representative to contact Nicole Cohen at to join the Rare and Neglected Diseases Caucus. (Nicole is in Rep. Crowley's office.) Tell your Representative that:

•Rare diseases are important to you because you (or a family member or friend) have one.

•Most rare diseases have a significant impact on the lives of those affected. (Feel free to briefly describe your own experiences.)

•Most rare diseases still have no treatment. Of the 6,800 listed on the NIH website, only about 200 have FDA-approved treatments.

•Individuals and families affected by rare diseases feel alone and forgotten by our nation's healthcare system, and often have to fight their own battles to obtain needed treatment and services.

•The word "rare" is misleading. Nearly 30 million Americans have rare diseases, and we are lifting our voices as a group to ensure that our message is heard.

•The Rare and Neglected Diseases Caucus will provide a forum through which members of the House of Representatives can discuss issues that are important to many of their constituents.

Your Email is Important!

Sometimes people think their voices won't be heard when they contact members of Congress. This isn't true. NORD's public policy team reminds us again and again that every voice is heard, and that the messages constituents send to their Congressional Representatives are taken seriously. Members of Congress know that if you care enough to write, you care enough to vote. Your message will be heard.

How Can the Caucus Help?

A Caucus will provide a specific forum for the exchange of ideas and information related to rare diseases. With a robust membership and a policy agenda, it can drive positive, meaningful legislation. A determined and bipartisan Rare and Neglected Diseases Caucus can result in a Congress that is better educated about this constituency and more capable of addressing the issues.

This is an opportunity for every one of us to help. Please write your Representative today and ask him or her to join the Caucus. Or, if your Representative is already a member of the Caucus, please write today to thank him or her for joining.

Remember: Your Representative knows that if you care enough to write, you care enough to vote! Your message will be heard.

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