Providing Realistic Opportunity to Equal and Comparable Treatment (PROTECT) Rare Act is HERE!
H.R. 6094 will make it easier for rare disease patients to get the treatments our doctors say we need.  It’s not about ‘special treatment’ for rare diseases.  It’s about equal footing with those living with more common conditions. 

Fill in this form to ask your Representative to sponsor this bill.
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This is what will be sent to your Representative:

I’m a patient with a rare disease and I’m asking you to co-sponsor the Providing Realistic Opportunity to Equal and Comparable Treatment Rare (PROTECT Rare) Act, HR 6094. I need your help getting this very important bill passed in Congress so that people like me can get the treatments our doctors say we need.  

The bill gives patients what Congress already gave cancer patients. So the precedent is there  -  evidence-based, medically necessary care covered by Medicare & Medicaid. Now rare disease patients need it too! 

It's not about special treatment.  Rare disease patients often can’t convince Medicare and Medicaid to consider our treatments ‘medically necessary,’ and we’re caught in a cycle of appeals and denials.

I urge you to support the PROTECT Rare Act. Please call Jackie Weinrich in Rep. Matsui’s office at x5-7163 or Sarah Gilbert in Rep. Dunn’s office at x5-5235. I would greatly appreciate a reply letting me know my representative is supporting rare disease patients.

Please provide 3-5 sentences about the rare disease impacting you or your family member, any difficulties with insurance, or anything else you want to share about your experience with rare disease.
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