Rare Disease United Foundation
September 6, 2013
Rare Disease United Foundation is an effective and efficient patient advocacy organization. Their passion for making a difference is evident through their proactive outreach to patients and families as well as their powerful advocacy at the state level. They have built credibility at the state level, as well as the national level, with key stakeholders, policy makers, and third party partners. The patients and the volunteers are the hearts and hands that bring the mission of this organization to life!
Ways to make it better...
If I had to make changes to this organization, I would...
secure more funding so that it could replicate efforts across the country. They have the skills and knowledge to do so. Their advocacy work in the rare disease space is outstanding.
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