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,
'/>"/>

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

Page: 1 2 3

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:8/29/2014)... BOSTON , Aug. 29, 2014   Vittamed Corporation ... Boston announced today that T. (Teo) Forcht ... to the company,s Board of Directors. " ... distinguished career in neurosurgery, medical innovation and venture capital," said ... are extremely delighted to add his clinical, strategic, and entrepreneurial ...
(Date:8/29/2014)... , Aug. 29, 2014 /PRNewswire-iReach/ -- ChemImage will ... the Australian and New Zealand Forensic Science Society,s ... Sciences in Adelaide, Australia . ... concerning the advancements that hyperspectral imaging can bring ... Jeffrey Beckstead , Director of Product Development at ...
(Date:8/29/2014)... PASO ROBLES, Calif. , Aug. 29, 2014 /PRNewswire/ ... launch of its new website design . The ... an overhaul that showcases the company,s new services and ... By implementing a new streamlined design, viewers can ... deliver metrics for health care practices and create a ...
Breaking Medicine Technology:Vittamed Adds Prominent Neurosurgeon and Venture Capitalist T. Forcht Dagi to Board of Directors 2ChemImage to Discuss Hyperspectral Imaging for Forensic Investigation at the ANZFSS 22nd International Symposium on the Forensic Sciences 2ChemImage to Discuss Hyperspectral Imaging for Forensic Investigation at the ANZFSS 22nd International Symposium on the Forensic Sciences 3PMDS Announces New Website 2
... Acquire Next Generation Molecule GRC 6211 for the Potential ... Treatment of Pain, Including Osteoarthritic Pain, INDIANAPOLIS and MUMBAI, ... ) today announced that it has entered into an,agreement with ... Limited India (GPL). Under the terms,of the agreement, Lilly will ...
... MedImmune today announced,results from a recent economic ... is the standard of care for prevention of,severe ... virus,(RSV) in high- risk infants. Released at the ... Exhibition, the analysis evaluated the,costs of providing Synagis ...
Cached Medicine Technology:Lilly and Glenmark Pharmaceuticals Announce License Agreement 2Lilly and Glenmark Pharmaceuticals Announce License Agreement 3Lilly and Glenmark Pharmaceuticals Announce License Agreement 4Lilly and Glenmark Pharmaceuticals Announce License Agreement 5MedImmune Presents New Pharmaco-Economic Data at American Academy of Pediatrics Regarding Infants at High Risk for RSV 2MedImmune Presents New Pharmaco-Economic Data at American Academy of Pediatrics Regarding Infants at High Risk for RSV 3
(Date:9/1/2014)... 01, 2014 Registration is now open for ... and 1-Mile Race to be held on Sunday, September 21, ... Yard at Harmon Meadow in Secaucus, New Jersey. All proceeds ... national nonprofit dedicated to restoring a sense of self, restoring ... and our military families. , General registration is $30 with ...
(Date:9/1/2014)... 01, 2014 The Outlier Series announced ... exclusive interview content from one of the exceptional women ... Outliers: Women Game Changers . The title of the ... Game Changer Jenny McClendon . McClendon is currently a ... formerly the star of WeTV show, Raising Sextuplets. , ...
(Date:9/1/2014)... September 01, 2014 Beginning Tuesday, September ... 3,000 medical professionals and 10,000 consumers for the annual ... 5-day gathering of the nation’s top medical professionals who ... or conditions. The week-long event contains more than 120 ... instruction available in the pain management field. , MarijuanaDoctors.com ...
(Date:8/31/2014)... 31, 2014 MYMOBILEUNI (MMU) strategy ... social media marketing tools access to digital, resources, ... will utilize all tools to reach and collaborate ... our multiple learning channels. , MMU, today announced ... an authoring tool that applies social networking concepts ...
(Date:8/31/2014)... 01, 2014 GoDaddy, IX Web ... provide VPS (Virtual Private Server) hosting, which is ... into many servers, each of which has the ... dedicated computer. Top10BestSEOHosting.com has recently compared many professional ... companies are the best VPS hosting suppliers in ...
Breaking Medicine News(10 mins):Health News:Hope For The Warriors New Jersey Run to Honor Wounded and Families of the Fallen 2Health News:Upcoming Outlier Series eBook about Jenny McClendon, PA-C, Former Start of Raising Sextuplets 2Health News:Upcoming Outlier Series eBook about Jenny McClendon, PA-C, Former Start of Raising Sextuplets 3Health News:Medical Marijuana Doctor Company Set to Present at Las Vegas Pain Week 2Health News:My Mobile University Announces Global Strategic Plan and Unveils New Android App to Enhance and Impact Lives World-Wide Through Education for All as Learning Platform 2Health News:My Mobile University Announces Global Strategic Plan and Unveils New Android App to Enhance and Impact Lives World-Wide Through Education for All as Learning Platform 3Health News:GoDaddy, IX Web Hosting and Bluehost Are Awarded As Hosting Experts by Top10BestSEOHosting.com 2
... New Building provides Medical Office space for Doctors, Healthcare ... Specialists, and Medical Professionals, ... for medical space in the Near West Suburban market with ... square,feet of class A, medical office space available in Oakbrook ...
... September 2007. New Phase II data presented today suggest ... treatment of men with Hormone Resistant Prostate Cancer (HRPC), ... men with metastatic HRPC who were asymptomatic or mildly ... experienced a 45 percent reduction in the risk of ...
... Than Half Find Sex Lives Exciting, ATLANTA, Sept. ... themselves (i), but less than one hour on foreplay ... their love lives as,exciting. And while there are ... quality and quantity. On average, Americans spend 35 ...
... the country,s,largest hot tub retailer, announced that it ... give specially-designed therapeutic hot tubs to in 2008.,Through ... will donate 12,ThermoSpas hot tubs -- one a ... warm water therapy. ThermoSpas encourages parents, teachers and,friends ...
... PRAI ) announced today that it plans to relocate ... area by the end of,2007. "The current headquarters ... operational functions," said Terrance J.,Bieker, chief executive officer. "After ... the Raleigh area will allow,PRA to tap into a ...
... Selects Ericom(R) PowerTerm(R) WebConnect for ... ... Health Partners, a,New York-based non-profit hospital system, has chosen PowerTerm ... to,provide doctors and staff with secure, on-demand remote access to ...
Cached Medicine News:Health News:Randolph Equities to Break Ground on State of the Art Medical Center in Space Starved Near West Chicago Suburbs 2Health News:Randolph Equities to Break Ground on State of the Art Medical Center in Space Starved Near West Chicago Suburbs 3Health News:Phase II study shows HRPC patients with bone metastases see improved survival with ZD4054 2Health News:Phase II study shows HRPC patients with bone metastases see improved survival with ZD4054 3Health News:Americans Not Making Time for Making Love 2Health News:Americans Not Making Time for Making Love 3Health News:Americans Not Making Time for Making Love 4Health News:Photos: America's Chronically Ill Children Have New Hope with 'Hot' Gift 2Health News:PRA International Relocating Headquarters to Raleigh 2Health News:PRA International Relocating Headquarters to Raleigh 3Health News:Ericom Provides Significant Cost-Savings for Major New York City Healthcare Organization 2
The Pe-Plus offers an additional clinical option for replacing the acetabulum....
... Metal material and modularity into ... a fusion of technology and versatility ... for initial and long-term stability, but ... shell and liner options to address ...
Trident Hemispherical Acetabular Shells are a true hemispherical shape designed to achieve press-fit fixation by under-reaming the acetabulum....
The Bofor acetabular revision cup addresses cases of severe acetabular destruction....
Medicine Products: