posted by Suzanne
The IFOPA sent out the following text in an email regarding the newly-established “Rare and Neglected Disease Caucus.”
“As part of our ongoing effort to reach our elected officials with the important message to increase attention to rare and neglected diseases, we wish to share this notice with you and encourage you to take action!
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 the Caucus, Crowley and Upton will focus on
* Bringing Congressional attention to the 6,800 known rare diseases that currently have no approved therapies
* Ensuring sufficient funding for research and orphan product development
* Exploring ways to incentivize companies to create new drugs, biologics and humanitarian use devices and
* Providing an opportunity for Members of Congress, families and advocacy groups to exchange ideas and policy concerns
Please encourage your Representative to become a member of this important Caucus!”
Please write your local Representative and ask that they take part in this caucus. I have contacted Rep. Jay Inslee. Here is the email I sent him….
Mr. Inslee,
I am writing you because I recently heard of the newly-established “Rare and Neglected Disease Caucus.” I am hoping you will join this caucus. I am a mother of a 4 year old daughter who has been diagnosed with an extremely rare disorder, Fibrodysplasia Ossificans Progressiva (FOP). FOP occurs one in two million births. My daughter’s muscles and tendons will eventually ossify to bone and will eventually stop any form of movement in her body. I can only hope that one day there will be some sort of drug or gene therapy (if not a cure) that could help her and others who suffer from this crippling disorder. There is a need to raise awareness of these rare disorders. I do appreciate your time and please consider joining the new caucus.
Your constituent,
Suzanne McCloskey
For those who live in the United States, please contact your representative and ask that they too join this great caucus. You can go to http://www.house.gov/ and type in your zip code. Your representative will be listed. Most representatives have their own website. Find a “contact” area on the website.
