with more accomplishments, increased media exposure and higher awareness of rare diseases, we certainly have something to celebrate 

Thanks to the Pew Internet Project, we have a lot of data about ePatients. These empowered, engaged and educated patients (and families) are helping to bring about a transformation of healthcare in this country. Pew’s Susannah Fox has named them “healthcare superheroes.”

Through our experience at Siren Interactive, we know a lot about rare disease patients who are supercharged ePatients. These patients are hyper-empowered. Because they have to be. Leading up to Rare Disease Day on February 29, 2012 (a rare day indeed) I’d like to celebrate some of the amazing accomplishments of a few rare disease communities.

Rare disease patients start clinical trials
Team Sanfilippo Foundation is a nonprofit medical research foundation started by a group of parents with the mission of finding potential therapies that can be tested clinically in the near future. Team Sanfilippo used social media to beat out thousands of others to win $250,000 from the Pepsi Refresh Project. The grant funded a clinical trial led by Dr. Haiyan Fu of the Research Institute at Nationwide Children’s Hospital in Columbus.

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From 2006 to 2011 Latin health search keyword queries grew 588% per Google 

I attended the Google Hispanic Marketing Forum on February 15, 2012 in New York City. While Hispanics are certainly not a rare market, whenever I get a chance to attend a Google event I go because I always learn something new.

According to the last US census, one in six Americans are now Hispanics, and this figure is rapidly growing. Although all the speakers were excellent, I’m going to share insights from the presentation that focused on pharma and a few other facts. Eric Talbot, who spent a dozen years in pharma and is currently at Univision, started his talk with the fact that about 69% of Hispanics have health insurance and currently represent 9% of the US adult pharmaceutical market. This is a growing market and represents an opportunity.

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I ask myself how I can best help a future parent who will be in my shoes at some point down the road 

In anticipation of Rare Disease Day on February 29, we are honored to share this guest post by Terri Granard. She is a caregiver for her son, Eli, who was diagnosed with the rare chromosomal abnormality Ring 14, and one of the authors of the book Uncommon Challenges; Shared Journeys.

We all have something to deal with in our lifetime and you do the best you can with what you’ve got. It’s just life; that’s how it is. I’m one of many moms around the world who’s the caregiver of a child with a rare disease or disorder. My son, Eli, was diagnosed with Ring 14 (chromosome ring 14 deletion syndrome) when he was six months old after suffering a stroke and seizure. There are fewer than 300 people worldwide who have this rare condition.

Eli can suffer from one to 10 or more daily seizures that may include body tremors, major body thrashing and apneic episodes that cause him to stop breathing and require oxygen. A vagus nerve stimulator implanted in his chest sends waves to the brain to “interrupt” a major seizure. Because of the strokes and seizures, Eli has had to learn and relearn basic skills like walking and sign language.

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Facebook is rolling out the timeline format to brand pages on February 29, 2012 

Siren is proud to support the Digital Health Coalition, a nonprofit created to serve as the collective public voice and national public forum for the discussion of the current and future issues relevant to digital and electronic marketing of healthcare products and services. Led by Mark Bard and Joe Farris, the Digital Health Coalition held an event on February 6 in New York City as part the ePharma Summit. Bard released and reviewed “Social Media and User-generated Health and Medical Content: Guiding Principles and Best Practices for Companies and Users.” I strongly recommend reading these common sense principles.

All the presenters were excellent, but I’m going to recap the regulatory focused presentations and the changes announced by a Facebook representative.

Mark Gaydos, Vice President, U.S. Regulatory Affairs Marketed Products at Sanofi, started off the sessions by sharing how Sanofi has been able to embrace social media. It’s especially admirable that Sanofi, which took a beating early on via social media, is using the space to have two-way conversations.

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Recently there has also been an integration of Google+ content into search engine results pages 

Google has been an important part of the health research process for patients and healthcare providers for many years. This year Google is shaking things up with a list of new products and innovations that will affect both the paid and organic search strategies of pharmaceutical companies.

Google+
Google started allowing businesses to create Google+ pages/profiles and visitors to opt into specific “circles” in order to receive specific posts and updates. An example might be using circles to customize messages for patients, healthcare providers and caregivers. The Google+ platform could integrate well with a segmented marketing strategy, and Google+ now has a network of 100 million users worldwide.

However, one reason for pharma to wait to create Google+ pages is because the commenting capability cannot be suppressed or controlled the way it can be on YouTube. Note that just like Facebook (850 million users), a Google+ page requires resources to add content, monitor comments and interact with users. Roche is the only biopharmaceutical company we have seen who has taken advantage of Google+ with placeholder company and career pages.

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