ACTION ALERT: Help Children with Rare Diseases Gain Access to Lifesaving Treatments!

By Laura Edwards

I need your help with something.

If not for me, do it for Taylor.

If not for Taylor, do it for the thousands of other children who suffer from rare diseases and don’t have access to new drugs that could save their lives – not because scientists are incapable of developing those drugs, but because the current wording of a federal law makes it difficult for them to navigate the regulatory process and bring their discoveries to clinic, where they can actually help real, live people.

The Unlocking Lifesaving Treatments for Rare diseases Act of 2012, or ULTRA, H.R. 3737, would:

  • improve access to the FDA’s accelerated approval process for extremely rare diseases
  • provide a more predictable regulatory process
  • decrease associated costs and spur investment in the development of treatments
  • require the FDA to use the best science available, ensuring that treatments are safe and effective and reach patients sooner.

Watch this short video message from Tracy VanHoutan, founder of Noah’s Hope – an important partner of Taylor’s Tale in the fight against Batten disease and other rare diseases – to learn more about why you should support the ULTRA Act of 2012.

In less than five minutes, YOU can help thousands of children like Taylor. Please follow the link below to contact your legislators, asking them to support a NO-COST bill that would accelerate the rate at which we are able to get lifesaving treatments to children with ultra-rare diseases. Ask your friends and family to do the same, because we need 5,000 people to sign on in support of the ULTRA Act of 2012 prior to Rare Disease Day (Feb. 29, 2012)!

Support the ULTRA Act of 2012

Note: When you click on the link, you will be redirected to the website of our partner, the Rare Disease Legislative Advocates (RDLA).

  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.

Visit the RDLA Site Now to Show Your Support

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6 Comments On “ACTION ALERT: Help Children with Rare Diseases Gain Access to Lifesaving Treatments!

  1. katrina hulwi Reply

    Good luck!!

    1. Member Laura King Edwards Reply

      Thank you for your support!

  2. Mary grace fowler, Reply

    I support the ULTRA act of 2012. It is a no cost bill to help these children.

    1. Member Laura King Edwards Reply

      Mary Grace,

      Thank you for supporting the ULTRA Act of 2012. Children with ultra-rare diseases desperately need our support, and you’re right – this is a no-cost way to do it!

      Laura

  3. Lisy Reply

    I support the ULTRA act of 2012

    1. Member Laura King Edwards Reply

      Thank you for your support of the ULTRA Act!

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