Take Action!
The current wording of a federal law is making it difficult for children with rare diseases to access new drugs that could save their lives. Help us change the law by clicking the “Take Action” button below.
You will be directed to the website of our partner, the Rare Disease Legislative Advocates.
1. Enter your
contact information
2. Click the button to review and submit a message to your legislator
Your contact
information will not be sold or used for any other purpose.
Take Action Video
Tracy VanHoutan, Noah and Laine's Father
We need 5,000 people to submit messages to their legislators by February 29, Rare Disease Day. Please ask everyone you know to visit www.NoahsHope.com and Take Action!
The Unlocking Lifesaving Treatments for Rare diseases Act of 2012, or ULTRA, H.R. 3737, will improve access to the FDA's Accelerated Approval process for very rare diseases, provide a more predictable regulatory process, bring down development costs, and spur investment in the development of treatments. Additionally, ULTRA requires the FDA to use the best science available, ensuring treatments are safe and effective and reach patients sooner.
The proposed amendment will enable children like Noah and Laine access to drugs that could save their lives. To learn more, watch the Take Action video.
Thank you for taking time to Care About Rare. Our children's lives depend on it.
Every childhood disease deserves a cure.
--Jennifer and Tracy VanHoutan (Parents of Noah, Laine, and Emily)
