Navigation Links
New Book From Siren Interactive Reveals How Parents of Children With Rare Diseases Play Major Roles in Diagnosis and Treatment
Date:2/22/2011

CHICAGO, Feb. 22, 2011 /PRNewswire/ -- Siren Interactive, a relationship marketing agency specializing in rare diseases, announces the publication of "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.

Wendy White, president of Siren Interactive and herself the mother of a child with a rare disorder, compiled the anthology, leading with her own family's story. Dr. Timothy Cote, 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," he says.  "I recommend this book to anyone who wants to understand the power that's driving the orphan drug movement."

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 percent 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 percent of treatment therapies are prescribed off-label.  

White believes 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."

"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. In recognition of Rare Disease Day, an annual observance that falls on the last day of February, Siren Interactive will provide complimentary copies of the anthology to each of the company's business partners.  

For review purposes, media may access a pdf of the book here. Additionally, a hard copy is available on request.

About Siren InteractiveSiren Interactive is a relationship marketing agency focused on understanding the behaviors of patients and physicians dealing with chronic rare diseases. Because of this expertise, the agency can drive new patient starts and life-long adherence to therapies for its clients. For more information about the company or "Uncommon Challenges; Shared Journeys," visit www.sireninteractive.com.CONTACT:Julie Laitin (212) 286-2424

Cynthia Amorese (908) 665-8072Email: jlaitin@julielaitin.com

Email: camorese@comcast.net
'/>"/>

SOURCE Siren Interactive
Copyright©2010 PR Newswire.
All rights reserved

Related medicine technology :

1. New CoMotion(R) Trials Software by General Dynamics Enables Rapid, Interactive Sharing of Real-time Data for Clinical Trials
2. Tata Interactive Systems Partners With Bersin & Associates for Exclusive Executive Learning Forum - TLF 2009
3. MolSofts New Technology Brings Online Publications to Life in Fully Interactive 3D
4. Lillys Online, Interactive Health Education Program Receives Two Web Awards
5. InteractElsevier Delivers 3-D Interactive Anatomy Learning Tools
6. Elsevier/MC Strategies Partners with American Association of Critical-Care Nurses to Launch Interactive, Online Pharmacology Course
7. Specialty Surgical Instrumentation Launches New Interactive Web Site
8. Landmark National Survey Conducted by Harris Interactive® Sheds Light on Hidden Problem of Heavy Monthly Periods
9. Physicians Interactive Launches Partnership with SampleMD to Expand Sampling Options for Clinicians and Reduce Costs for Patients
10. Capital BlueCross Newly Designed Health Care Reform Web Portal Features New Videos, Interactive Tool
11. A Sociolinguistic Analysis of In-Office Dialogue Reveals Psychiatrists and Parents Have Significantly Different Perceptions on ADHD and Psychiatric Comorbidities
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:12/9/2016)... Research and Markets has announced the addition of the ... ... vaccines market to grow at a CAGR of 6.83% during the ... the growth prospects of the global travel vaccines market for 2016-2020. ... from the sales of various vaccines administered to actively immunize meningococcal ...
(Date:12/8/2016)... IRIDEX Corporation (NASDAQ: IRIX ) today ... common stock, $0.01 par value (the "Offering" with such shares ... final terms of the Offering will depend on market and ... be no assurance as to whether or when the Offering ... net proceeds it will receive from this offering for working ...
(Date:12/8/2016)... , Dec. 8, 2016  The global biosurgery ... 8.8% during the forecast period of 2016 to 2021. ... by 2021 from USD 18.21 billion in 2016. The ... rising incidences of sports related injuries and spinal problems, ... rising need of effective blood loss management. ...
Breaking Medicine Technology:
(Date:12/9/2016)... , ... December 09, 2016 , ... ... at The Pierre Hotel in New York, NY, on December 3rd, to benefit ... and physicians attended the annual event, which raised over $1 million - the ...
(Date:12/8/2016)... ... December 08, 2016 , ... The Florida Hospital Tampa Wound ... Medical Society (UHMS), the leading authority in hyperbaric medicine. This accreditation identifies the ... hospitals and facilities have earned this distinction. This is the second time the ...
(Date:12/8/2016)... ... December 08, 2016 , ... ... Management (MTM), adherence, and other pharmacist-delivered patient care services, has announced the promotions ... Eric Hoessel to vice president of sales. , Litsinger joined Mirixa in ...
(Date:12/8/2016)... ... December 08, 2016 , ... ... access for customers and employees that are both engaging and easy to use. ... Smart Technology, the software company revealed today its plans to roll out new ...
(Date:12/8/2016)... ... December 08, 2016 , ... California Senate Bill (SB) 863, signed into law ... in 2013 and 2014, according to CompScope™ Medical Benchmarks for California, 17th Edition ... to the study, medical payments per claim in California decreased 4 percent in 2013 ...
Breaking Medicine News(10 mins):