Patient Advocacy Legislation Support

February, 2015

We, the undersigned organizations and patient advocacy groups, wish to register our support of bill XXXX, currently before the House Health, Education & Welfare Committee – a bill to create a Rare Disease Advisory Council. This bill is budget neutral and would not impact the statewide budget.

House Bill XXXX – An Act relating to support for the rare disease community, resource coordination and quality of life, sponsored by Representative XXXX, is to ensure that state-of-the-art information on rare disease education, treatment, and access to care is available to health care providers and patients.

This advisory council will serve as a consensus group designed to coordinate efforts in state resources, private entities, and social services, including bringing additional monies to the state to fund improvements in the treatment of rare diseases.

The are approximately XXXX STATE, the majority of them children, living with a rare disease. Including caregivers, the number rises to XXXX. Despite our large numbers, we are underserved and overlooked. We urge the members of the House Health, Education & Welfare Committee and their colleagues in the full legislature to protect our most vulnerable patients by approving XXXX.

Respectfully,

Patricia Weltin, Executive Director
Rare Disease United Foundation

Please show your support

By filling-out this this form you are urging the members of the House Health, Education & Welfare Committee and their colleagues to pass this bill.

Patient Advocacy Support H 7094 – Thank You

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