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

Stories of Love, Hope and Community by Rare Disease Caregivers

Posted by | 10:48am on Tuesday, February 22, 2011

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.

What is a Rare Disorder?
Rare disorders, also called orphan diseases, are defined as conditions that affect fewer than 200,000 people in the U.S. Despite the seemingly low number, such disorders affect one in 10 Americans, 80% of them children. The category includes cystic fibrosis, hemophilia, muscular dystrophy and all childhood cancers, as well as numerous diseases with lesser-known names. Rare diseases are often difficult to diagnose, and approximately 70% of treatment therapies are prescribed off-label.

Empowered Caregivers
I believe the pharmaceutical industry can provide significant educational services to parents of children with rare disorders, but must realize that conventional ways of building relationships are ineffective with this group. This community is dominated by mothers who are fighting for their children’s lives, in an environment offering scarce information and resources. They are unusually driven, and the internet has made them unusually empowered. They are avid researchers who become experts in their children’s diseases. They are critical analysts and ardent advocates who explore all treatments and fight for their children’s right to access them. Pharma marketers must re-think how they approach this community and explore new ways of meeting their needs.

Read “Uncommon Challenges; Shared Journeys”
“Uncommon Challenges; Shared Journeys” is available through Amazon.com for $16.00 per copy or through Siren Interactive for bulk orders. All profits will be distributed among the rare disease groups represented in the book. Stories were contributed by: Catherine Calhoun, Jordana Holovach, Janis Marie, Laura Buchanan, Lori and Matt Sames, Julie Loeffler, Terri Granard, Dominique Friend, Nicole and Bill Morris, Joan Bellontine, Dayna Fladhammer and Pat Furlong. To learn more about the authors and their charities, go to the book website http://press.sireninteractive.com.

About Wendy White

Since founding Siren Interactive in 1999, Wendy has been recognized as a thought leader at the intersection of niche pharma brands, patient empowerment and online marketing. Her vision for how the internet can facilitate interactions and provide crucial information that patients, caregivers and their healthcare providers previously struggled to find has propelled Siren to the forefront of relationship marketing for rare disorder therapies.

View other posts from Wendy

13 Pingbacks/Trackbacks

    23 February 2011 at 2:02pm
    RT @NHF_Hemophilia: New book shares ...
  • Hemo Society CO
  • 23 February 2011 at 11:02pm
    Stories of Love, Hope and Community ...
  • Hannahs Hope 4GAN
  • 24 February 2011 at 1:02pm
    Recommended: Uncommon Challenges; ...
  • SusannahFox
  • 24 February 2011 at 9:02pm
    RT @SusannahFox: Recommended: ...
  • Taub Health Sci Lib
  • 24 February 2011 at 11:02pm
    RT Thanks @SusannahFox: Recommended: ...
  • Wendy White
  • 25 February 2011 at 4:02am
    #RareDisease Day Feb 28 buy this ...
  • Howard Liebers, MPH
  • 25 February 2011 at 4:02pm
    RT @sirenwendy RT Thanks ...
  • Eileen O'Brien
  • 26 February 2011 at 8:02am
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  • Rett UK
  • 28 February 2011 at 1:02pm
    RT @HHF4GAN: Stories of Love, Hope ...
  • Lisa Armstrong
  • 01 March 2011 at 5:03am
    RT @sirenwendy: RT thx @SusannahFox: ...
  • Frieda Hernandez
  • 04 March 2011 at 12:03am
    [...] they seek a connection online. The study quotes Siren’s book about rare disease caregivers, Uncommon Challenges; Shared Journeys, and ...
  • Study from Pew Internet Project Supports Rare Disease Insights | SIRENSONG
  • 15 July 2012 at 12:07am
    Read “Uncommon Challenges; Shared ...
  • Dominique Friend
  • 20 February 2013 at 9:02pm
    Read about “Stories of Love, Hope and Community by Rare Disease Caregivers” @ Siren Song: http://bit.ly/fLD6Tb #raredisease ...
  • In Crystal Skin
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