RARE ACTION NETWORK ® Presentation by NORD June 16, 2014.
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Transcript of RARE ACTION NETWORK ® Presentation by NORD June 16, 2014.
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RARE ACTION NETWORK ®
Presentation by NORD
June 16, 2014
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NORD• Leading rare disease patient advocacy organization for > 30 years
• Principal resource for federal agencies and corporations when addressing questions or issues concerning the rare disease community
• Institutional member of the rare disease community having built great working relationships with patients and patient groups, the FDA, NIH, Biotechnology and Pharmaceutical companies, payers, Medical and Scientific Communities
Confidential & Proprietary Property of NORD
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NORD
• Pioneered techniques to champion the rare disease agenda
• At the head of the rare disease community’s decision making table
• Independent and unbiased advocate for patients with rare diseases and the organizations that support them
Confidential & Proprietary Property of NORD
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What is the Rare Action Network?
The Rare Action Network is NORD’s initiative to mobilize patients around the country to advocate for policies that support the needs of patients with rare diseases.
It will predominantly work at the state level, where more and more decisions are being made concerning health care, especially therapies and services for patients with rare diseases.
Confidential & Proprietary Property of NORD
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Goals:
Build a unified network of rare disease advocates to take action on issues that impact
patients with rare diseases.
Increase awareness of the challenges faced by the rare disease community to those that can
take action to make essential changes.
Address issues of access and coverage to essential treatments and therapies for patients
with rare diseases at the state level.
Confidential & Proprietary Property of NORD
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Importance of Being “In the States” States play a large role in determining which healthcare services and treatments patients with
rare diseases have access to
The Affordable Care Act added a layer of complexity
Need to maintain a pulse on patient’s experiences
Federal policy advocacy can be guided by on the ground affordability and access to treatments issues
Better prepared to translate state-based issues to federal action when appropriate
Confidential & Proprietary Property of NORD
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Members of the Rare Action Network ®
Confidential & Proprietary Property of NORD
RANPatient Organizations
Medical & Scientific
Communities
Patient Advocates
Public & Private Payer
Government
Industry
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NORD’s Network: Over 1,500 members
NORD has a presence across the entire U.S. through
Patient Organization Members (blue pins)
Corporate Council Members (green pins)
Individual Members and Activists that support NORD’s mission (red pins).
Confidential & Proprietary Property of NORD
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Rare Disease Day Advocacy
• NORD’s State House Project has tripled in impact since its launch in 2012.
• State House Events took place in 12 states in 2014.
• RDD Advocacy directed at officials took place in 25+ states.
Confidential & Proprietary Property of NORD
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NORD Support for the Network• Connecting, educating and training advocates
• Regional Meetings• Webinars• Toolkits
• Data collection & management• Issue Management Reporting System• Coverage Denial Reporting System
• Develop state policy agenda & mobilize network • Written correspondence with elected state officials• Lobby days in State Capitols• Coalition building
Confidential & Proprietary Property of NORD
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ROLE OF MEMBERSRare Action Network ®
Confidential & Proprietary Property of NORD
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Help Grow and Build the Network
Advocacy is most successful when rare disease interest groups are united and band together to circulate
common messages and calls for action.
• Grow the network by reaching out to your communities
• Collaborate and partner with NORD and other members of the network
• Raise awareness and recognition
Confidential & Proprietary Property of NORD
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Data Collection & Management
Data = Substantiation
• NORD will ask members to report issues to determine:
• What are some of the immediate needs/problems we’re aware of?
• Where are they taking place?
• Who is being impacted by them?
• Is anyone actively seeking to address this issue? If yes, who?
• NORD will survey issues, track trends, provide reports and help mobilize
action
Confidential & Proprietary Property of NORD
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State Policy Report Card Establish the structure and key indicators to be used
Assess both positive and negative state policies
Grade states on their performance
Identify best practices and work with the network to advocate their adoption, or similar, in other states
Confidential & Proprietary Property of NORD
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Education for State Officials Work with network to develop and distribute educational materials to
introduce state officials to rare diseases and salient policies that affect populations Departments of Insurance, Medicaid Agencies, State Health Insurance Marketplaces, and
more.
Support key officials in drafting pro-rare disease policies
Continue education through webinars and briefings
Confidential & Proprietary Property of NORD
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Direct Advocacy
Advocate for pro-rare disease policies on both the state and federal levels
using the following avenues:
In-person lobbying and advocacy
Written Correspondence
Coalition Building
Multi-state campaigns
Confidential & Proprietary Property of NORD
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INFRASTRUCTURERare Action Network ®
Confidential & Proprietary Property of NORD
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Confidential & Proprietary Property of NORD
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State Ambassadors State Ambassadors
Lead RAN representative for their state• Help new advocates join the network in your state• Work with NORD’s regional managers to identify best practices and issues faced by patients in your
state• Represent your state in discussions on content for educational materials and in the development of
programs for regional meetings• Participate in legislative campaigns and attend lobby days• Help mobilize your state for successful advocacy
Deputy State Ambassadors Support the coordination of efforts with your State Ambassador
Confidential & Proprietary Property of NORD
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2014 Timeline
Phase 1Jan ’14 - Oct‘14
Implementation
Building the Network(ongoing)
Data Collection(ongoing)
Phase 2 Issues Analysis(ongoing)
Develop State Policy Priorities
(ongoing)
Direct Advocacy(ongoing)
Phase 3 Evaluation
Confidential & Proprietary Property of NORD
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QUESTIONS?
Confidential & Proprietary Property of NORD
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rarediseases.org
Lisa Phelps, MPHDirector of Membership
[email protected](203) 744-0100
Paul MelmeyerAssistant Director of Public Policy
[email protected](202) 588-5700
Confidential & Proprietary Property of NORD