Today, NORD is joining the Everylife Foundation, Genetic Alliance, Global Genes, and the rare disease community in voicing our support for the OPEN Act (H.R.971), and requesting its inclusion within the 21st Century Cures Act.
On today’s day of action, we are asking you to call your Congresspeople, and ask them to support the OPEN Act, and to ask them to tell the Energy and Commerce Committee that they should include this important legislation in the 21st Century Cures Act.
Here is a sample script for your message:
Hello, my name is XXXX. I’m calling to urge you to support the OPEN ACT, HR 971, and to ask you to urge your colleagues in the Energy and Commerce Committee include it in the 21st Century Cures Act.
The OPEN Act could drastically increase the number of rare disease therapies, and could solve many of the off-label reimbursement problems that many rare disease patients face.
[please explain why the legislation is important to you as a patient]
Thank you for your time and consideration.
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To call your Congressperson, call the Capitol Switchboard at: (202) 224-3121.
Together we are strong!