2012 Patient Advocacy Summit Videos

RARE Patient Advocacy Summit 2012 – Welcome and Introductions


RARE Patient Advocacy Summit 2012 – Session 1 – RARE Patient Advocacy
Regulations, policy, appropriations … NIH, Capitol Hill, FDA, CDC, etc. – How does all of this fit together?  This session focused on how a unified and focused RARE community can best influence the decision makers that impact RARE policy, regulation, and funding, and discuss how and when to engage your community in the process.


RARE Patient Advocacy Summit 2012 – Session 2 – Accessing the Science
Learn how patient advocacy groups can leverage new technologies and science to expedite the development of therapies? Learn how to prepare for research on our respective diseases, engage the NIH, establish useful biobanks and registries, all to move research forward.


RARE Patient Advocacy Summit 2012 – Session 3 – RARE Foundation Business Models
Building self-sustaining non-profit organizations is an area of great focus with some new twists. We’ll discuss Venture Philanthropy, Virtual Biotechs, and learn from the participants about what is working for them. “A rising tide funds all boats” – how the RARE Fund will allow you and others to raise more funds, faster.


RARE Patient Advocacy Summit 2012 – Session 4 – Partnering With Industry
We’ll “talk turkey” with a panel made of up industry and 3rd party industry marketing partners about setting expectations, creating long-lasting powerful win-win collaborations, and how to be good partners over time.


RARE Patient Advocacy Summit 2012 – Session 5 – Building Healthy Communities
A lively discussion of what works in disease specific and geographically focused collaborations.


RARE Patient Advocacy Summit 2012 – Session 6 – Communicating With the Public
We’ll discuss issues of developing and implementing communication strategies, messaging, engaging the press, and the ever-changing balance of online/social media vs. direct personal contacts.