Siren Interactive Organizes Panel on Critical Issues at the World Orphan Drug Congress

CHICAGO - April 15, 2014 - PRLog -- Chicago, IL (April 10, 2014)—Wendy White, Founder and CEO of Siren Interactive, will conduct a pre-conference workshop entitled Critical Issues in Patient Advocacy Engagement & Collaboration: How Do We Find Common Ground? at the World Orphan Drug Congress (http://www.terrapinn.com/2014/world-orphan-drug-congress-usa/index.stm) in Washington, D.C. on April 23^rd from 1:00–5:00 pm.


The workshop will focus on the opportunities to accelerate progress in rare diseases by involving multiple stakeholders. A distinguished panel of rare disease experts will participate in a discussion that includes questions such as:

- What are the key issues in US and global patient advocacy currently?

- How are pharmaceutical companies engaging patients earlier in the clinical trial process and mobilizing the patient voice?

- How are multi-stakeholder initiatives advancing diagnosis, awareness, and access to care?

- What is the role of data transparency in advancing treatment and what are some pitfalls to avoid?

- How do you develop actionable strategies and what are the potential consequences of non-alignment?

- What is the future forecast for patient advocacy?

Panelists represent the pharmaceutical industry, entrepreneurial ventures, and patient advocacy organizations:

- Carrie Burke, Director of Alliance Development, Shire Pharmaceuticals

-  Barbara Wuebbels, Vice President of Patient Advocacy & Investigator Relations, Audentes Therapeutics

-  Dr. Sharon Moalem, MD, PhD, award winning neurogeneticist, evolutionary biologist, inventor, and New York Times bestselling author

- Pat Furlong, Founding President and CEO of Parent Project Muscular Dystrophy

- Nicole Boice, Founder and President of Global Genes | RARE Project

- Ben Lenail, Co-Founder and Business Strategy Officer, ALD Connect

- Julie Raskin, Executive Director of Congenital Hyperinsulinism International and Co-Chair of NJ Rare

Wendy White will also be delivering a presentation on Orphan Drug Launches, Patient Relationships and Social Media Forays on Friday, April 25^th at 11:05 am. From patient engagement to innovation, she’ll discuss 5 key things big pharma can learn from the rare disease community.  The presentation will also cover highlights from her recent participation in a rare disease hackathon (http://www.sireninteractive.com/sirensong/how-technology-...) at MIT.

The World Orphan Drug Congress continues to attract an impressive slate of rare disease thought leaders and this year is shaping up to be one of the best.

About Siren Interactive

Siren Interactive is a rare disease relationship marketing agency with unmatched expertise in addressing the challenges and unmet needs of patients, caregivers, and physicians dealing with rare disorders. For more than 14 years, across more than 30 different disease states, we’ve had 1 focus: Finding rare disease patients and connecting them to our clients’ brands. As trailblazers in recognizing that patient-driven decision making is central to successful orphan drug commercialization, we are constantly innovating to meet patients and caregivers where they live. To learn more about our proprietary approaches to building trust relationships with rare disease stakeholders visit http://www.sireninteractive.com