Yesterday I wrote about the very positive near future projections for investments into rare disease drug research and development. We need all of you to take action now to insure that this bright future isn’t threatened by “sequestration,” the automatic budget cuts that are scheduled to take place on January 1, 2013 if action isn’t taken.
That’s where you come in. NORD, the National Organization for Rare Disorders, and the Global Genes Project, leading rare disease advocacy umbrella organizations, are asking all of us affected by rare diseases to join a letter writing campaign to our elected officials urging them not to allow “sequestration” to happen. “Sequestration” would lead to budget cuts that would savage federal medical research funds and increase the time it takes for new drugs to be reviewed and approved. Our voices need to be heard.
Here is a link to a sample letter from NORD to elected officials. You can tailor it as you see fit and send it to your elected officials: http://www.capwiz.com/rarediseases/issues/alert/?alertid=62135591
Research and development of rare disease treatments depends heavily on cooperation between industry, government, academia, and patients. Patients and their families need to lead the fight to save these important government funds so our unique cooperation will continue to extend and improve the lives of people living with rare diseases.
