By using this site, you agree to the Privacy Policy and Terms of Use.
Accept
Health Works CollectiveHealth Works CollectiveHealth Works Collective
  • Health
    • Mental Health
    Health
    Healthcare organizations are operating on slimmer profit margins than ever. One report in August showed that they are even lower than the beginning of the…
    Show More
    Top News
    healthcare cybersecurity
    4 Helpful Tips on How to Protect Your Medical Practice Against Cyber Attacks
    October 24, 2021
    Health Check Diagnosis Medical Condition Analysis Concept
    6 Health Woes With Online Remedies
    January 19, 2022
    Eight Things Men Should Know About the Male Menopause
    Eight Things Men Should Know About the Male Menopause
    April 24, 2022
    Latest News
    Beyond Nutrition: Everyday Foods That Support Whole-Body Health
    June 15, 2025
    The Wide-Ranging Benefits of Magnesium Supplements
    June 11, 2025
    The Best Home Remedies for Migraines
    June 5, 2025
    The Hidden Impact Of Stress On Your Body’s Alignment And Balance
    May 22, 2025
  • Policy and Law
    • Global Healthcare
    • Medical Ethics
    Policy and Law
    Get the latest updates about Insurance policies and Laws in the Healthcare industry for different geographical locations.
    Show More
    Top News
    healthy nursing school habits
    Healthy Habits for Nursing Student Nursing School Students
    May 24, 2024
    High Deductables
    High-Deductible Insurance and Rising Bad Debt
    July 24, 2015
    How People Are Taking Advantage of Health Deals in the Recent Recession
    February 5, 2021
    Latest News
    Top HIPAA-Compliant Messaging Apps for Healthcare Teams
    June 25, 2025
    When Healthcare Ends, the Legal Process Begins: What Families Should Know About Probate and Medical Estates
    June 20, 2025
    Preventing Contamination In Healthcare Facilities Starts With Hygiene
    June 15, 2025
    Strengthening Healthcare Systems Through Clinical and Administrative Career Development
    June 13, 2025
  • Medical Innovations
  • News
  • Wellness
  • Tech
Search
© 2023 HealthWorks Collective. All Rights Reserved.
Reading: Diagnosis Is a Cause Everyone Can Get Behind
Share
Notification Show More
Font ResizerAa
Health Works CollectiveHealth Works Collective
Font ResizerAa
Search
Follow US
  • About
  • Contact
  • Privacy
© 2023 HealthWorks Collective. All Rights Reserved.
Health Works Collective > Diagnostics > Diagnosis Is a Cause Everyone Can Get Behind
Diagnostics

Diagnosis Is a Cause Everyone Can Get Behind

Pam Todd
Last updated: October 10, 2013 8:11 am
Pam Todd
Share
4 Min Read
diagnosis
SHARE

diagnosisOne of the most moving moments (and there were many of them) at Global Genes’ recent patient summit was when Heather Long, founder of the Texas based non-profit U. R.

diagnosisOne of the most moving moments (and there were many of them) at Global Genes’ recent patient summit was when Heather Long, founder of the Texas based non-profit U. R. Our Hope, rose to tell the audience why she felt that diagnosis was such a critical issue for the rare disease community. Long and her husband, Cody, have three children; two daughters and a son who passed away in 2006 at the age of 5. They know that they have lost their son. What they don’t know is why. Doctors told the Longs that Cal probably had a very rare metabolic disease, but they were unable to diagnose it.

Since then, Long has devoted her life to helping other families who are desperately seeking a diagnosis for a rare disorder. Along with supporting families in their search, her organization works to pass legislation and create a network of physicians who are faced with similar cases so they can collaborate on finding a diagnosis and improve care and outcomes for their patients.

A Cause We All Care About

More Read

Carestream Logo
Diagnostic Reading #44: Five Must-Read Articles From the Past Week
Disruptions on the Yellow Brick Road II
Cook Medical Introduces Endoscope With an HD Camera Attached- Portable Imaging System for Urologists
Adhesive Tape Replaces Skin Biopsy in New Melanoma Test
More Evidence that Medical Malpractice Reform Wouldn’t Stop Excessive Testing

Diagnosis is  a cause everyone cares about. Doctors want a correct diagnosis for the disease so they will know how best to treat it. Pharmaceutical companies want patients to be diagnosed so they will have access to the best care. Parents want their children to be diagnosed because they know, better than anyone else does, that having a name for your child’s disease may mean the difference between life and death. Parents like Long and others who have lost children to rare disorders, care deeply enough to devote their time to creating new systems that will help diagnose children they have yet to meet.

Why Diagnosis Matters

Sometimes the disorder is so rare that it has no name. But far too often with rare disorders, the problem is misdiagnosis or a delayed diagnosis. There may even be a treatment out there somewhere which could slow progression – if you only had a name for the disorder. Patients who have been misdiagnosed may not only fail to receive appropriate care, but also might undergo treatments that could potentially harm them, including surgery and psychiatric treatments.

The scope of the problem is staggering. According to a EURORDIS study 25% of patients with a rare disease had to wait between 5 and 30 years for a diagnosis, 40% received the wrong diagnosis, and others received no diagnosis.

What Is Being Done

There are many ways people and organizations are working to improve diagnosis, everything from the National Institutes of Health Undiagnosed Disease Program to nonprofits like In Need of Diagnosis. There are also exciting new uses for technology that are providing improved access to research data and facilitating diagnosis. Take for example FindZebra.com a search engine for rare diseases. Also Granatum, a kind of Facebook for cancer researchers that describes itself as “a social collaborative working space semantically interlinking biomedical researchers, knowledge and data.”

In the next few weeks we will be taking an in-depth look at what is being done to improve diagnosis of rare diseases. We invite you to come with us on this journey – and please let us know of any initiatives you would like to add to our list.

Photo courtesy of Horia Varlan on Creative Commons

Share This Article
Facebook Copy Link Print
Share

Stay Connected

1.5kFollowersLike
4.5kFollowersFollow
2.8kFollowersPin
136kSubscribersSubscribe

Latest News

women dental care
What Is a Smile Makeover and How Much Does It Cost?
Dental health
June 30, 2025
HIPAA-Compliant Messaging Apps
Top HIPAA-Compliant Messaging Apps for Healthcare Teams
Global Healthcare Policy & Law Technology
June 25, 2025
recovering from injury
Rebuilding After Injury: Path to Physical and Emotional Recovery
News
June 22, 2025
scientist using microscope
When Healthcare Ends, the Legal Process Begins: What Families Should Know About Probate and Medical Estates
Global Healthcare
June 18, 2025

You Might also Like

In the Battle of Doctor’s Orders Versus Patient Power, the Patient is Winning

March 5, 2012
Patient satisfaction
BusinessDiagnosticsHealth ReformHospital AdministrationPublic Health

Top Three Things for Addressing the Patient Experience Challenge

July 30, 2013

Hope as scientists reveal key to detecting Alzheimer’s early

February 16, 2016
electronic access to xray and lab doctor
BusinessDiagnosticsNewsPublic Health

Electronic Access Increases Test Ordering Behavior

March 10, 2012
Subscribe
Subscribe to our newsletter to get our newest articles instantly!
Follow US
© 2008-2025 HealthWorks Collective. All Rights Reserved.
  • About
  • Contact
  • Privacy
Welcome Back!

Sign in to your account

Username or Email Address
Password

Lost your password?