The Benefits of Partnership Include Access to Policy Tool Kit Component

– What is Rare Disease? Education of Rare Disease by leveraging tools from other rare disease foundations and showing advocates how to use the tools.

– Knowledge of each state’s stats and using those to form a success council and network

– Provide guidance on the role of patient advocacy

– Recruiting KOL’s is a very important role to ensure successful rare disease councils

– Recruiting champions for legislative support.

– Building supporting relationships in the community

– Advisory Council on Rare Disease Formation

– Task force formation to report back suggested initiatives

– Expanding your state’s rare disease network

– Expansion beyond Policy – What’s possible? Fundraising, how to approach industry and foundations.

Clinician, Patient and Advocate Toolkit Components

– The Art of Patient Involvement. What is Rare Disease? Education of Rare Disease, link to population health, share lessons and increase scope of reach

– Identify all key stakeholders

– Recruit Stakeholders

– Creating and agreeing on shared agenda

– Recruiting champions for implementation

– Implementation map, timeline, who does what by when

– Building healthcare system support

– The role of patient advocates

– Building supporting relationships in the community

– Educational Content event

Your Avenues to Success

Launch Your State Initiative for Rare Disease Patient Success

North Carolina has already proven success with council formation. The non-profit will advise how to create a successful council by providing the tools to do this. Policy will always be patient focused and patient supported by using repeatable customized templates for rapid implementation. There is currently a high patient and consultant demand for changes in policy in the rare disease community.

RDII will provide a highly skilled implementation team to accomplish policy changes in each state by leveraging a broad network of pharmaceutical companies, patient advocacy groups, key opinion leaders, clinicians, hospitals and government agencies.

Find additional resources from our partners here