the internet gives patients and caregivers access not only to information, but also to each other 

The Pew Internet Project and the California HealthCare Foundation today release a new report, “Peer-to-peer Healthcare.” It includes insights from an online survey of 2,156 members of the National Organization for Rare Disorders (NORD), which show the depth and breadth of what is made possible when patients and caregivers connect with each other online.

The research supports what we’ve found through our work in rare diseases: the internet gives patients and caregivers access not only to information, but also to each other. This report shows how people’s networks are expanding to include online peers; especially for those with a rare disease. Health professionals remain the central source of information for most Americans, but “peer‐to‐peer healthcare” is a significant supplement.

People Like Me
When asked about the last time they had a health issue and where they looked for information, people living with a rare disease far outpaced all other groups in turning to their peer network. More than half of rare‐disease respondents say they turned to family and friends. Another majority say they turned to others who have the same health condition. It’s important to note that health professionals were still the most popular choice even among this highly‐networked group.

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I recommend this book to anyone who wants to understand the power that’s driving the orphan drug movement," says Dr. Coté 

I am thrilled to announce that Siren has published “Uncommon Challenges; Shared Journeys,” a collection of 13 personal stories offering intimate views into the lives of families affected by rare disorders. The narratives reveal how parents — mothers in particular — play critical roles in obtaining a correct diagnosis and appropriate treatment for children with rare diseases. The stories also show how caregivers in the rare disease community seek and use information differently from other groups and have many unmet needs for education and support.

As readers of this blog know, my daughter has a rare disorder, and I compiled the anthology and shared my own family’s story. Dr. Timothy Coté, director of the FDA’s Office of Orphan Products Development, says the book “strikes straight to the heart of the matter” by focusing on patients and their families. “Academics talk molecules, industry talks revenues, government talks regulations, but parents’ words of their heartbreaking love for their children with rare diseases are the truest words of all.”

“I recommend this book to anyone who wants to understand the power that’s driving the orphan drug movement,” says Dr. Coté.
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Even I, who work in the rare disease space, wasn’t on the lookout for a rare disease 

This post is written by a colleague who also works in the rare disease space. She wishes to remain anonymous to protect her son’s privacy.

My teenage son was recently diagnosed with the rare disease Alpha-1 Antitrypsin Deficiency (called Alpha-1 for short).  Looking back, all the signs were there.  Even I, who work in the rare disease space, wasn’t on the lookout for a rare disease.  Alpha-1 is an inherited condition and occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin (AAT) that is produced by the liver.  The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants, such as tobacco smoke.

A few years ago, at an industry seminar, I even had the opportunity to hear John Walsh speak, President and CEO of the Alpha-1 Foundation and Co-Founder and President of AlphaNet.  Mr. Walsh, along with his brother, has Alpha-1.  As he discussed the disease, I couldn’t help but wonder If that was what my grandfather died of (diagnosed as emphysema), my uncle at age 50 died of (lung complications) or what two of my aunts were dealing with (both lung issues, one diagnosed with Sarcoidosis).  I told my mom that my aunt should be tested for Alpha-1.  Along the way, I was informed that the disease generally doesn’t affect African Americans, so I automatically ruled it out and moved on.
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Alnylam Pharmaceuticals has agreed to donate $10 for every video posted (up to $5,000) 

As part of Rare Disease Day 2011, the National Organization for Rare Disorders (NORD) is inviting patients and family members to create a video library of rare diseases. The goal of the project is to educate the public through the stories of people with a variety of rare diseases.

Answer Three Questions
NORD is requesting 30-90 second videos that answer three simple questions:

1. What rare disease affects you (or loved one)?
2. How does this affect your (or their) life?
3. What advice would you give to other people affected by this disease or another rare disease?

The videos will be posted to the NORD YouTube channel and help to increase public awareness.  To see a few example videos, go to http://youtube.com/raredisorders. Videos should be uploaded via the RareDiseaseDay.US site.

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Rare Disease Day is February 28, 2011, and Siren Interactive is proud to collaborate with NORD in order to raise awareness 

For the first two years of her life my daughter, Casey, had medical issues but no diagnosis of what was wrong. Despite some of the best doctors in one of the largest cities in America trying to find a diagnosis, it came down to me, her mother, doing Google searches. I became a “Detective Mom.” Desperate for knowledge, I was able to locate the information that eventually led to the diagnosis of a rare disease: nail-patella syndrome. Today, Casey is thriving, enjoying fourth grade, and playing goalie on a soccer team.

Unfortunately, my story is way too common. This is why Rare Disease Day is so important. Rare Disease Day, sponsored in the U.S. by the National Organization for Rare Disorders (NORD), is held every year on the last day of February. This year, Rare Disease Day is February 28, 2011, and Siren Interactive is proud to collaborate with NORD in order to raise awareness of the nearly 7,000 types of rare diseases.

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it’s about developing and nurturing long-lasting relationships through trust 

You may be familiar with Customer Relationship Management (CRM), a common strategy to support the business-customer relationship. However, many businesses make the mistake of implementing CRM programs by throwing money into the backend software and technology without a plan, and then sitting back and expecting results. Although the technology behind data collection is important, companies often neglect the most critical component: the development of a strategic plan that focuses on building an ongoing relationship with the customer.

Rare disorders marketing, which is characterized by small, unique customer groups, requires much more than managing communications – it’s about developing and nurturing long-lasting relationships through trust. This calls for a redefinition of CRM as Continuous Relationship Marketing: a new and unique communication strategy that is critical to success in the rare disorders space, where each customer is unique and valuable.

Recently, Katie Mihelich and I met with PharmaVOICE and we discussed this new definition and specifically how it can be used to build relationships with (and market to) the rare disorder community. Listen to our podcast, Redefining CRM, and you’ll walk away with some best practices and insights. For more detail, download our whitepaper, 3 Critical Elements of CRM in Rare Disorder Marketing, too.

Let us know what you think!

(Image courtesy of Sherrie Thai on Flickr.)