The benefits of partnership include access to Policy Tool Kit Components

  • 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.

NC 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

Want to work with us?

%d bloggers like this: