A blog exploring pharmaceutical relationship marketing, emarketing and innovation with a focus on rare disorders.
The convergence of rare disease, digital communications, and pharmaceutical marketing communications

trust and pharma Archive

Highlights from the World Orphan Drug Congress 2014

Posted by | 9:22am on Thursday, May 15, 2014 | No Comments

view collaboration as a four-legged table in order to gather support, drug approval and access 

The World Orphan Drug Congress (WODC) brings together patient organizations and industry leaders, researchers and academics, members of the FDA and Congress, and many other active individuals in the rare community.  On an annual basis, WODC offers attendees an opportunity to make new connections and review the latest topics in advancing awareness and treatment of rare disorders. The discussion topics were wide ranging, covering innovations in genomic testing and diagnostic tools, clinical research outcome identification, pathways to approval for new therapies, granting early access and globalizing access to treatment. One consistent message that radiated throughout was the need for collaboration to make progress.

Trends in the Orphan Space
Stephanie Okey, MS, Head of North America, Genetic Diseases and SVP, General Manager US Genetic Diseases at Genzyme, delivered a keynote address focusing on trends in the orphan disease space.  She cited the importance of perspective, people, and communication. With increased costs in health spending, there are still major gaps in specialty support of the majority of conditions. Rare diseases need people, particularly patients, to bring attention to these gaps. Communication allows for people to share their perspectives, growing knowledge about the disease, which can build specialty support and pave the way for treatment options and access. Read More

Why Transparency Matters More Than Ever

Relationships are important in rare—and so are reputations. Rare disease communities are often small and closely knit. Patients and caregivers…

Tags: , , , ,


Personal Health Is Social

Gaining insight into patient attitudes about health can be both interesting and beneficial for marketers and healthcare professionals. Recently, the…


How Trust Is Earned in 2011

One way to build brand loyalty in the pharmaceutical and biotech industry is by forming and maintaining relationships based on…



Call for Transparency in Physician/Pharma Relationships

When you have a message to deliver, trust is critical. This is especially true when you’re relying on physician KOLs, who…


Google 2nd to Doctors as Source of Health Info

Dr. Google is still diagnosing Americans. A recent survey found 22% consider Google searches “influential” in seeking health info. While…

Tags: ,


Let Your Moral Compass Guide You

I get inspired every Wednesday during the pharma marketing and social media tweetchat by the insightful and succinct comments. But…


How Can Pharma Gain Social Media Credibility? Partner with Trust Agents

Just like a good guest brings wine to a dinner party, pharma companies should bring value to the social media…

Tags: ,


Trust Economics and Web 3.0

Last week, the  Web 3.0 conference was held in New York City.  As we are still struggling with what to…


No One Cares About You

No one cares about you – they care about themselves and what you can do for them. That is the…


Protonix promotional cup

New Voluntary Code of Conduct for Pharma

PhRMA, the drug-industry trade group, says it’s banning some of the freebies that sales reps dole out to doctors. This…


What Makes a Good Relationship Online?

Today’s healthcare organizations are marketing at the intersection of 3 powerful forces: changes in healthcare, changes in communication channels, and…




Trust is important for all corporate websites but it is especially crucial within the Pharma web community. Pharma must earn…


Marketing Value: From Selling to Service

It used to be that marketing value was derived from how well you could sell. Many, many books have been…


Siren Interactive
  • Siren Interactive
  • Rare Disease Relationship Marketing Experts
  • 626 West Jackson Blvd, Suite 100
  • Chicago, IL 60661
  • 312.204.6700
  • 866.502.6714 (Toll Free)
  • www.sireninteractive.com