Toolkit #1: What is Rare Action Network?

30-Year History Since 1983, NORD has ensured that the rare disease patient voice has been at the table when important federal policy and regulatory decisions are made NORD recognized the need to build a network of rare disease advocates across the U.S. to unite and mobilize patients and develop a similarly recognized presence at the state level With over 32 years of leadership in federal policy and regulatory affairs, we launched the Rare Action Network (RAN) to ensure the needs of patients were being met wherever they live

What is Rare Action? The goal of RAN is to ensure that the rare disease community is represented and supported in all 50 states To achieve this, NORD is leveraging our 250+ patient organization members and Rare Disease Day® advocates to develop a nationwide grassroots advocacy network RAN is jointly managed by NORD policy and membership teams Not all rare disease issues can be resolved through policy. RAN was designed to extend beyond legislative action to include other important activities: Education among local medical communities Education in schools and universities

RAN Achievements in 2015

What does this mean for rare disease advocates? RAN is a service for the rare disease community provided by NORD. You can use RAN to: Learn about new legislation and regulations in congress and your state that may affect you Influence federal and state policy decisions Connect with other rare disease advocates in your community Learn more about rare diseases and the legislative process to become an even better advocate Work directly with NORD staff to develop new policy initiatives Find tools and guides to support the advocacy work you are already doing

RAN Core Values Collaboration: Promote effective, efficient, and inclusive partnerships between all stakeholders and the communities they serve by defining and achieving common goals Integrity: Be held accountable to commitments and goals, while developing timely and collaborative partnerships within the rare disease community so that all stakeholders feel supported, respected, and heard Empowerment: Remain at the forefront of public policy, awareness, and educational initiatives by enabling stakeholders to encompass their communities and become compelling advocates for rare diseases Sustainability: Offer distinguished training, support, and resources to attain network growth by continuously seeking new information and trends by monitoring, evaluating, and responding to changes Respect: Value the diverse experiences and strengths of all stakeholders

RAN Resources State/Federal Legislative Tracker Annual State Report Card RAN Web Portal: www.rareaction.org Official NORD policy statements Toolkits, videos, webinars NORD staff contacts Event opportunities Daily news and policy updates on twitter: @rareaction

www.raredieases.org www.rareaction.org @rarediseases @rareaction