Thursday, August 7, 2014

Rare Patient Advocacy Summit

header1PAS 2

September 11-12, 2014
Hyatt Regency Resort & Spa, Huntington Beach, California

Over 200 participants will join in-person, and over 5,000 via Livestream webcast during the Global Gene’s 2014 RARE Patient Advocacy Summit, September 11-12, at the Hyatt Regency Resort & Spa in beautiful Huntington Beach, CA.
Highlights from our agenda

Innovations in Science
One of the most exciting things about being a patient advocate is having the opportunity to see behind the scenes in science. All over the world, small labs with big ideas are breaking down barriers between patients and treatments.

You’ll have a front row seat to the presentations of four ground-breaking research platforms that are about to change the way we create solutions for rare disease on a global level. These twenty-minute science briefs promise to show new approaches to research and drug development. In each segment, there will be five minutes of Q&A that will allow rare disease non-profits and patient advocates a chance to ask questions, learn more about each project and how its mission will help bring drugs to market more quickly for those in the fight against rare disease. Hear from
Project VioletImmusoft CorporationAmerican MedChem andRARE Science. More information here.

Advocates at this year’s 2014 Global Genes Patient Advocacy Summit will have an exclusive chance to learn how their voice can make a difference in the fight for faster cures. For critical patients and their families, the risk versus benefit of new treatments has been a simple decision.

Learn from
 FasterCures Director of Strategic Initiatives, Kim McCleary, about what these programs mean for rare disease advocates. You’ll hear how patient organizations are mobilizing their communities to help inform decisions made by the FDA and industry sponsors so that treatments move more swiftly from the lab to the patients who need them. More information here

Becoming an Unstoppable Charity
At this year’s 
RARE Patient Advocacy Summit you’ll take your first steps towards being unstoppable as Zenzaga CEO, Keegan Johnson, brings you the answers and the attitude it takes to create an unstoppable charity.

What can advocates hope to learn at this session?
  • Show Me The Funds: How and where do I get more donors? What makes or breaks a fundraiser? How can I put our organization on a plan for financial growth and opportunity?
  • Get Them Engaged: How can I get people excited about our mission? How can I bring on new volunteers and inspire them? How am I going to get our supporters involved?
  • Can They Hear Me Now?: How can I effectively tell our story to help our project grow? How do I generate momentum– Increase member engagement and learn the same strategies politicians and network-marketing experts use to make their visions reality?

Can’t attend in person? Our new Livestream webcastcomponent will allow up to 5,000 advocates from around the globe to attend virtually from their homes or offices via webcast at no cost! The event will be broadcast live with opportunities for patients to participate from afar using social media such as twitter and Facebook, using the hashtag #2014GGSummit.

Read more about the RARE Patient Advocacy Summit here.

To register for this event (in-person or via Livestream), please visit:

"Remember....Research is the key to your cure!"

No comments:

Post a Comment

Alie Campbell VP

ALIE CAMPBELL PORPHYRIA and ME TYPE OF PORPHYRIA Variegate Porphyria (VP) My story is probably not much different than most. I...