Carcinoid patients, physicians, family, friends and colleagues can help support Rare Disease Day 2011 by participating in NORD’s Write Your Reps Campaign. NORD (National Organization for Rare Diseases) and its advocacy partners have worked with members of the U.S. Congress to establish a Rare and Neglected Diseases Congressional Caucus. This Caucus is chaired by Congressman Joe Crowly (D-NY). Now NORD needs us to join the Write Your Reps Campaign in support of the Rare and Neglected Diseases Congressional Caucus.
Check the list of Caucus members on the NORD website to see if your Representative is there. Then click HERE and enter your zip code to access an online form that will allow you to send an e-mail directly to your Representative. And in case you’ve forgotten, this will also confirm who your current Representative is.
In your e-mail, please ask your Representative to contact Nicole Cohen at email@example.com to join the Rare and Neglected Diseases Caucus. (Nicole is in Rep. Crowley’s office). Share the following information with your Representative:
- 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 voice is important and your support of the Caucus can drive positive, meaningful legislation as well as a forum for the exchange of ideas and information related to rare diseases.
Your Representative knows that if you care enough to write, you care enough to vote! Your message will be heard.