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

Profiles >> Wendy White Archives

Rare Disease: Where Precision Medicine Was Born

Posted by | 3:35pm on Thursday, February 26, 2015 | No Comments

As the mother of a child with a rare disorder, I’ve watched with interest and admiration as this community has broken one barrier after another—innovating, advocating, collaborating, fundraising, organizing—all with one unwavering goal, to stop or reverse the suffering inflicted by a rare disease on someone they love.

The fact that rare disease communities have been responsible for the deconstruction and reinvention of many aspects of our healthcare system along the way is not just a coincidence. Progress in treating rare diseases has been facilitated by:

  • Quantum leaps in our knowledge of genetics and epigenetics
  • Development of new technologies that handle large data sets with speed and agility
  • Rapid growth in the use of social media, apps and online tools to improve health and quality of life

Paving the Way for Precision Medicine

Those same forces are responsible for the sea change that is taking place in medicine in general.  When President Obama announced his Precision Medicine Initiative, budgeting $130 million to establish a one-million strong database of peoples’ genetics, health, and lifestyle data at the National Institutes of Health (NIH) and scale up efforts to identify genomic drivers in cancer and insure data security, he was publicly acknowledging what people in the trenches already knew, that the future of medicine will be targeted treatments for subpopulations. Read More

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How Technology Will Improve the Future for Rare Diseases

Our collaboration with Global Genes and Sharon Moalem, MD, PhD at H@cking Medicine at the Massachusetts Institute of Technology (MIT)…

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The Mighty Caregiver: Moving Towards Personalized Care with Healthcare’s Biggest Advocates

When my daughter Casey was born with nail-patella syndrome (NPS), the orthopedic surgeon said she would never climb stairs. What…

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Guidelines for Movement Marketing

Movement marketing is a great way to empower patients by rallying them around a cause and motivating them to take…

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US Supreme Court Building

Supreme Court Ruling Impacts Genetic Research

On June 13, 2013, the US Supreme Court ruled that human genes may not be patented. The unanimous decision will…


The Orphan Drug Renaissance

A period of a renewal of life, vigor, interest is how renaissance is defined by Random House Dictionary. I think…


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The Bright Future of Orphan Drugs

I believe that the pharmaceutical industry is moving towards the rare disease marketing model. I’ve built my entire company around…


Advocacy Group Helped Fund New FDA-Approved Orphan Drug

I like to say rare diseases are different. One key way is that, for orphan conditions, it’s often the patients…


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New Mobile App Connects Duchenne Families to Clinical Trials

I have been privileged to know Pat Furlong for the past several years and work alongside her on the board…


Rare Disease Day 2013: Help Spread Awareness

Each year Rare Disease Day is celebrated worldwide on the last day of February. This year is even more special…


Leading With Passion

I was recently among several Chicago CEOs asked to discuss leadership by CEO IntroNet. The invitation resulted from Siren’s selection…


How Pharma Can Talk With Patients

I was pleased to lead a panel discussion on this topic at the Centric Ultra Orphan Conference in St. Louis…


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New Website Provides Information on Rare Endocrine Disorder

Can you imagine experiencing a wide range of physical and mental symptoms–including uncontrollable muscle spasms and cramps, seizures, fatigue, anxiety…


Rare Disease Patient Advocates and Orphan Drugs

For orphan drugs, the marketing strategy should include increasing awareness and education about the disease. This is a key mission…


Groundbreaking Legislation for Rare Disease Patients: FDA Safety & Innovation Act

The Food and Drug Administration Safety and Innovation Act, signed into law on July 9, 2012, includes important measures for…


InnovationPharm: What’s New in Search & YouTube

To keep up with what’s new and innovative in technology, as well as the biopharmaceutical industry, we have a learning…


Join the Groundswell to Expedite Scientific Research

A petition has been posted on the White House website, We the People, to require free access over the Internet…


What We Want From (Big) Pharma

We are honored to share this guest post from Melissa Hogan, founder of Saving Case. Melissa started the organization after…


The First FDA Rare Disease Patient Advocacy Day

We are pleased to feature a guest blog post from Catherine Sohn. She has more than 20 years of pharmaceutical…


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Patients at the Center at The Economist Pharma Summit

On February 9, I had the opportunity to speak at The Economist Pharma Summit 2012 in London. I was invited…


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The Power of Rare Disease Patients

Thanks to the Pew Internet Project, we have a lot of data about ePatients. These empowered, engaged and educated patients…


Discovering I Am Not Alone

In anticipation of Rare Disease Day on February 29, we are honored to share this guest post by Terri Granard….


Innovation Happens at the Margins

PharmaPhorum asked Siren Interactive to write a series of blog posts about the world of rare diseases. In this six-part…


Advocating for Treatments to Change Modern Medicine

On Monday more than 4 million readers received the Washington Post supplement focused on rare diseases. In addition to updates…


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Are You Missing the Opportunity with Long-Tail Search?

Although the vast majority of time spent online is spent on long-tail sites — or sites with an overall reach…


Study from Pew Internet Project Supports Rare Disease Insights

The Pew Internet Project and the California HealthCare Foundation today release a new report, “Peer-to-peer Healthcare.” It includes insights from…


Stories of Love, Hope and Community by Rare Disease Caregivers

I am thrilled to announce that Siren has published “Uncommon Challenges; Shared Journeys,” a collection of 13 personal stories offering…


Raise Your Hand to Help Millions of Americans Affected by Rare Diseases

For the first two years of her life my daughter, Casey, had medical issues but no diagnosis of what was…



NORD Helps Improve the Lives of Rare Disease Patients

In a win for rare disease patients and families, the U.S. House of Representatives yesterday passed the Improving Access to…


New Resource to Help Diagnose Rare Disease

Can you imagine knowing you are ill but going several years before receiving a diagnosis? Unfortunately, this may be the…


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