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