rare action network ®

RARE ACTION NETWORK ®

Presentation by NORDJune 16, 2014

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

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


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.


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.


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


Members of the Rare Action Network ®


RANPatient Organizations

Medical & Scientific

Communities

Patient Advocates

Public & Private Payer

Government

Industry

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).


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.


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


ROLE OF MEMBERSRare Action Network ®


Help Grow and Build the NetworkAdvocacy 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


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


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


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


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


INFRASTRUCTURERare Action Network ®


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


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


QUESTIONS?


rarediseases.org

Lisa Phelps, MPHDirector of Membership

[email protected](203) 744-0100

Paul MelmeyerAssistant Director of Public Policy

[email protected](202) 588-5700


mailto:[email protected]

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rare action network ®

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