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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Jamie Moore Jamie Moore Rare Disease United Foundation
Tammy Morris Tammy Morris ALD Foundation
Donna Sullivan Donna Sullivan The Coalition Against Pediatric Pain
Penny Brunner Penny Brunner Smiles for Miles Charitable Foundation
Scott Shepard Scott Shepard Galactosemia Foundation
Kirsten Kotlarchik Kirsten Kotlarchik The United Leukodystrophy Foundation Inc.
Olivia Weltin Olivia Weltin RDUF
Olivia Weltin Olivia Weltin RDUF
Janis Sherwood Janis Sherwood Fight ALD
Lisa Jennings Lisa Jennings 22q Nation
Kimberly Leonard Kimberly Leonard The Pediatric Justice Association
susan rump susan rump OAA
Ken Smith Ken Smith The Prader-Willi Syndrome Association (USA)
Laura Richter Laura Richter Incontinentia Pigmenti International Foundation - IPIF
Robin Marceca Robin Marceca PFIC Progressive Familial Intrahepatic Cholestasis-Resource for Pediatric Liver Disease
Rhonda Connolly Rhonda Connolly CHildren's PKU Network
Kevin Sorge Kevin Sorge New England Hemophilia Association
Frank Davis Frank Davis Spastic Paraplegia Foundation
Deborah Russo Deborah Russo MdDS Balance Disorder Foundation
Ingrid Ronngren Guerci Ingrid Ronngren Guerci Encephalitis Global, Inc.
Billie Duncan-Smith Billie Duncan-Smith CADASIL Together We Have Hope Non-profit Org
Patricia Weltin Patricia Weltin RDUF
Paul DiLorenzo Paul DiLorenzo Thalassemia Support Foundation
Shawnie Bray Shawnie Bray Hereditary Colon Cancer Foundation
Lauren Ashley Lauren Ashley PTEN World
Teresa Kennedy Teresa Kennedy Fanconi Anemia Reseac
Lori Sames Lori Sames Hannah's Hope Fund for GAN
Laura Richter Laura Richter Icontinentia Pigmenti International Foundation
Ingrid Ronngren Guerci Ingrid Ronngren Guerci Encephalitis Global, Inc.
Robin Marceca Robin Marceca PFIC.org
Billie Duncansmith Billie Duncansmith Cadasil Together We Have Hope
Rhonda Connolly Rhonda Connolly Children's OPKU Network
Pamela King Pamela King Global Patient Strategies
Patty Weltin Patty Weltin RDUF
Lawrence Zevon Lawrence Zevon Zevon Media LLC
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