advocacy

Unicorn Squad: Assemble! I Need Your Help!

Hi, it’s me! Your friend with a rare/orphan disease!

Did you know that desmoid tumors are designated as an orphan disease since it impacts less than 200,000 in the United States? (Hence, the “unicorn” half of the Unicorn Squad title.) As an orphan disease patient, I need your help!

In the Build Back Better plan, there is a proposed cut that would impact the rare disease community in a HUGE way. Here’s what the National Organization of Rare Diseases states:

“Section 138141 of the Build Back Better Act would dramatically curtail the Orphan Drug Tax Credit for qualified clinical testing expenses … The ODTC can help to offset the cost of developing and testing orphan therapies as they move through the clinical trial process” (like my current clinical trial drug!)

I am all for making medication affordable for consumers – trust me, I complain about it a lot… but let’s focus on the main drivers of high drug costs and not the companies that are actually helping people like me.

Please join me in asking Congress to protect the Orphan Drug Tax Credit! It’s quick and easy thanks to the NORD website. Simply click “take action” under the heading “Tell Congress to Protect the Orphan Drug Tax Credit Today!” Then enter your address so your representatives can be automatically populated. Enter your information on the left, and either send the draft letter or add your own language.

Thank you so much, friends. It truly takes a village to protect a unicorn!

With gratitude,
Christina

1 thought on “Unicorn Squad: Assemble! I Need Your Help!”

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