I know this is a long post, but if you have a few minutes, I hope you’ll read it and continue supporting my family and others like ours. The more you know!

The Orphan Drug Act (ODA) was passed in the U.S. in 1983 to encourage drug companies to research and develop therapies for rare diseases. Why is it called “orphan”? Because rare disease therapies generally lack sponsors to develop them. The market is small, research is expensive, and there is very little return on investment.

There are over 30 million Americans living with more than 7,000 rare conditions—yet only 5% of these diseases have an approved treatment. This means that the majority of those affected have no treatment options at all. For many families, taking a loved one home and being told to “make the best of the time they have left” is a devastating reality.

To incentivize research, the Orphan Drug Designation grants manufacturers and sponsors a 50% tax credit on qualified clinical testing, along with access to several grants to help offset development costs. According to the FDA, in the decade before the ODA was passed, only 10 treatments were developed for rare diseases. Since then, this incentive has helped bring nearly 500 new medications to patients—a proven track record of success.

Today, the House passed the Tax Cuts and Jobs Act, and the Senate will vote after Thanksgiving. This bill includes a proposal to repeal or weaken the Orphan Drug Tax Credit. This is one of the few tax credits that has directly saved lives. I’m asking you to stand with the #raredisease community to ensure it is not weakened or repealed as part of tax reform.

How Can You Help?

Follow the link below, enter your address and zip code, and a pre-written letter to your senators and representatives will be generated for you. All you need to do is enter your name, home address, email, and hit submit. It’s that easy.

https://salsa3.salsalabs.com/…/p/dia/action4/common/public/…

As always, thank you so much for your support. xoxo

#TheMoreYouKnow #WeHaveHIHopes #Hyperinsulinism #OrphanDrugs #TaxReform