Encourage your Representative to join the Rare Disease Caucus August 4, 2010

U.S. Representatives Joseph Crowley (D-NY) and Fred Upton (R-MI) have formally announced the newly-established Rare and Neglected Diseases Caucus. As co-chairs of this caucus, their goals are to bring Congressional attention to the 6,800 known rare diseases that currently have no approved therapies, ensure sufficient funding for research and orphan product development, explore ways to incentivize companies to create new drugs, biologics and humanitarian use devices, and provide an opportunity for Members of Congress, families, and advocacy groups to exchange ideas and policy concerns. Both Crowley and Upton are looking to you to encourage your Representative to become a member of this important Caucus.

Call the U.S. Capitol Switchboard at (202) 224-3121 today and ask to be connected to your Representative’s office. If you’re not sure who your Representative is, go to http://www.house.gov/ and enter your zip code to find out the name. Please encourage your Representative to become a member of this important Caucus AND let them know very briefly how Eosinophil Associated Diseases have affected your life.

Please email pac@apfed.org for suggestions on how to contact your representative, a sample letter, or to let them know that you have contacted your representative.  Thank you in advance for your hard work!

New EGID Registry! August 4, 2010

There is now a Registry for Eosinophilic Gastrointestinal Disorders (REGID) at http://regid.org/

Patients with and caregivers of children with EGIDs can soon register; however, the login and registration is still under construction.

From the Registry website:

The Registry for Eosinophilic GastroIntestinal Disorders (REGID) is a collaboration of medical centers, professionals, families, and individuals whose mission is to improve the knowledge, research, and outcomes for people living with eosinophilic gastrointestinal disorders. REGID is not only a national registry of people affected by eosinophilic gastrointestinal disorders but also a forum to enhance the connection of people to resources and research.

We’ll try to post again when the Registry is up and running.