Rare Disease Patients Get Amplified, Authentic Voice in Policy
Patricia Weltin
CEO/Founder Beyond the Diagnosis/Published Citizen Scientist/Architect of State-Based Advocacy/Thought Leader
FOR IMMEDIATE RELEASE
Rare Disease Patients Get Amplified, Authentic Voice in Policy
Rare Disease United Foundation launches ‘Patients in Policy’ initiative to ensure the rare disease community is heard.
PROVIDENCE, RI, March 27, 2017 - Patients in Policy is a nonpartisan effort to create and advocate for meaningful legislation that positively impacts those in the rare disease community. By bringing together patients and legislators, this program will focus on enacting real change needed to protect the community at both the state and federal levels.
For the past 5 years, Rare Disease United Foundation(RDUF) has been the leading policy change maker for rare diseases, authoring historic legislation for a Rare Disease Advisory Council, which has passed in several states. Within months of entering the rare disease space, RDUF worked with U.S. Senator Sheldon Whitehouse on the EXPERRT Act, which was signed into law by President Obama in July of 2012.
“At RDUF, we do not cherry-pick which legislation we work on. As parents and patients serving and living rare, we are personally invested in all legislation, both state and federal that will have a positive impact on the rare disease community”, said Patricia Weltin, CEO and Founder of RDUF.
Patients in Policy is a multi-pronged program that includes town hall meetings with legislators, helping patients stay up to date on the latest policy issues, ensuring patient advocates have the tools to advocate effectively at both the state and federal level, and to support legislation that will effect the community.
About Rare Disease United Foundation
Rare Disease United Foundation is the nation’s leading rare disease advocacy organization. Rare Disease United Foundation’s mission is to address the unmet needs of the rare disease community including raising awareness of rare diseases, reducing diagnosis time, reimbursement and other insurance issues, legislative efforts and relieving the isolation felt by those living rare.
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If you would like more information about this topic, please call Courtney Waller at (262)729-7785, or email [email protected]