Siren leads successful social media workshop at CBI Rare Disease Leadership Summit

Siren Interactive Founder and President, Wendy White, led a dynamic workshop on social media at the CBI 4th Annual Rare Disease Leadership Summit on July 15, 2009. The Pre-Conference Workshop, Health 2.0: How Empowering Patients Can Lead to Increased Patient Acquisition, focused on current research and case studies in patient empowerment and discussed how to utilize social media to reach and connect patients with rare disorders.

Many thought leaders from industry, government, and patient communities were brought together and participated in the workshop as Wendy presented Siren's research insights on the needs and behaviors of rare disorder patients. She also discussed the importance of providing shareworthy information as key to participating in the conversation with rare disorder communities and how to effectively utilize social media to help spread the word.

Other key speakers included:

  • Pat Furlong, Founding President & CEO, Parent Project Muscular Dystrophy
    Pat discussed how DuchenneConnect, an online patient self-report registry for the Duchenne/Becker muscular dystrophy community, helps connect patients to important resources and assists in the understanding and development of new treatment clinical trials. To date, DuchenneConnect has 1600 registered participants from 53 countries and has helped recruit patients and data for clinical trials.
  • Mary Dunkle, VP Communications, National Organization for Rare Disorders (NORD)
    Mary discussed the importance of partnering with patient advocacy groups like NORD and how social media can provide opportunities to participate in ongoing conversations. She also presented an example of how patient organizations and industry partnered successfully to promote Rare Disease Day via social networks.
  • Amy Waterhouse, VP Regulatory and Government Affairs, BioMarin Pharmaceutical Inc.
    Amy presented her perspective on the opportunities and inherent risks of social networking for the bio/pharma industry. She also shared examples of how to mitigate the risks of social media as well as successful case studies of BioMarin's experience with social media.

The workshop concluded with small group activities where individual groups were presented with hypothetical scenarios and tasked with brainstorming social media strategies. It was a dynamic and productive session with many innovative ideas.

"Favorite was workshop B [Health 2.0: How Empowering Patients Can Lead to Increased Patient Acquisition] – most useful for my position…", said an attendee from Novartis Pharmaceuticals.

"We would like to thank everyone who attended the workshop," said Frieda Hernandez, VP of Business Development. "And a special thanks to Pat Furlong, Mary Dunkle, and Amy Waterhouse for their valuable insights and expertise, and for helping make the workshop so successful."

For more information about Siren Interactive's capabilities and expertise, please contact Frieda Hernandez, VP of Business Development, at (708) 763-0763 or fhernandez@sireninteractive.com.

<< BACK