Rare Disease Advisory Council Legislation

Connecticut – Massachusetts – New Jersey – North Carolina – Rhode Island

This bill is being filed or has been filed in the following states: Connecticut, Massachusetts, New Jersey, North Carolina and Rhode Island. The Rare Disease Advisory Council would coordinate resources, address health coverage issues and 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 historic legislation is necessary to ensure that patients with a rare disease and their families have their many unmet needs addressed. We have waited too long. The time is now! Please ensure this legislation is passed by writing to your state’s legislators, submitting written testimony and testifying at the committee hearing.

Below is information by state. Please click below to read the bill filed in Massachusetts. Each state bill has similar content.

Letter of Support

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

We would like to thank the following organizations for their support of the Rare Disease Advisory Council Legislation:

CADASIL Foundation

Encephalitis Global, Inc. 

MdDs Foundation

Spastic Paraplegia Foundation

New England Hemophilia Association

Children’s PKU Network  

Progressive Familial Intrahepatic Cholestasis – Resource for Pediatric Liver Diseases (PFIC)  

Incontinentia Pigmenti International Foundation (IPIF)

The Prader – Willi Syndrome Association 

OAA 

The Pediatric Justice Association 

22q Nation 

Fight ALD 

The United Leukodystrophy Foundation Inc.

The Coalition Against Pediatric Pain (TCAAP)

Galactosemia Foundation

Smiles for Miles Charitable Foundation

Connecticut

For questions or information, please contact the State Legislative Coordinator.

Connecticut Legislative Coordinator

Patricia Weltin

Pweltin@rarediseaseunited.org

Please use the link below to find your Connecticut State Legislator and contact information:

Patricia Ferland Weltin

Massachusetts

For questions or information, please contact the State Legislative Coordinator.

Massachusetts Legislative Coordinator

Patricia Weltin

Pweltin@rarediseaseunited.org

Please use the link below to find your Massachusetts State Legislator and contact information:

Patricia Ferland Weltin

North Carolina

For questions or information, please contact the State Legislative Coordinator.

North Carolina Legislative Coordinator

Sharon King

king6458@bellsouth.net

Please use the link below to find your New Jersey State Legislator and contact information:

Rhode Island

For questions or information, please contact the State Legislative Coordinator.

Rhode Island Legislative Coordinator

Patricia Weltin

Pweltin@rarediseaseunited.org

Please use the link below to find your Rhode Island State Legislator and contact information:

Patricia Ferland Weltin