®
RARE ACTION NETWORK
Presentation by NORD
June 16, 2014
Confidential & Proprietary Property of NORD
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
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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
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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.
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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.
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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
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Members of the Rare Action Network ®
Patient
Advocates
Public &
Private Payer
Medical &
Scientific
Communities
Patient
Organizations
Government
RAN
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).
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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.
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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
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ROLE OF MEMBERS
Rare Action Network ®
Confidential & Proprietary Property of NORD
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
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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
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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
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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
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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
INFRASTRUCTURE
Rare Action Network ®
Confidential & Proprietary Property of NORD
Confidential & Proprietary Property of NORD
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
2014 Timeline
Phase 1
Implementation
Building the
Network
(ongoing)
Data Collection
(ongoing)
Phase 2
Issues Analysis
(ongoing)
Develop State
Policy Priorities
(ongoing)
Direct Advocacy
(ongoing)
Phase 3
Evaluation
Jan ’14 - Oct‘14
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QUESTIONS?
Confidential & Proprietary Property of NORD
Lisa Phelps, MPH
Director of Membership
lphelps@rarediseases.org
(203) 744-0100
Paul Melmeyer
Assistant Director of Public Policy
pmelmeyer@rarediseases.org
(202) 588-5700
rarediseases.org