ADVOCACY

“To change “what is” into “what should be”.

The patient voice is undoubtedly the most important and effective voice in rare disease advocacy.  To encourage, organize, and amplify the patient voice, RAAP has begun forming our “Rare Disease Patient Engagement Coalition.”   With pressing policy battles at both the state and federal levels in 2024, it is critical we engage, educate, and organize rare disease patients to ensure the rare voice is heard.  


GOALS

Our patient engagement coalition aims to increase collaborations with all stakeholders in rare diseases, using collective abilities to engage, educate, and advocate for policy solutions that benefit rare disease patients. 

CORE FUNCTIONS

The core functions of RAAP’s Rare Disease Patient Engagement Coalition consist of:

·      Education

·      Patient Advocacy Toolbox

·      Caucus Development 

·      State & Federal Advocacy Engagement 

·      Patient Story Development 

·      NCSL Participation