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
    stress disorder
    5 Ways To Manage Post-Traumatic Stress Disorder
    October 27, 2021
    Medical device classification and development strategies
    Medical device classification and development strategies
    April 5, 2023
    varicose veins
    Varicose Veins Prevention: 3 Lifestyle Changes to Make Right Now
    May 1, 2022
    Latest News
    First Aid Training Enhancing Workplace Health and Safety
    September 25, 2023
    Beyond the Clinic: Medical Surveys Are a Roadmap to Passive Income for Doctors
    September 23, 2023
    5 Self-Care Habits to Help You Live an A+ Life
    September 21, 2023
    Keep Employees Safe & Healthy By Reducing Warehouse Injuries
    September 20, 2023
  • 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
    escher
    The Coming Revolution in Consumer Driven Care
    September 17, 2013
    projected nursing shortages
    Exploring the Spectrum: An In-Depth Look at the Many Sides of Nursing [INFOGRAPHIC]
    May 7, 2014
    aco mistakes
    Five Ways to Lead an ACO to Failure
    February 23, 2015
    Latest News
    Job Seekers with Disabilities Should at Health Insurance Benefits
    September 12, 2023
    Reasons That Drug Prices Are Rising to Unsustainable Levels
    September 12, 2023
    How Revenue Lifecycle Management Helps Healthcare Providers to Optimize Business Operations
    September 6, 2023
    The Hidden Benefits of Practice Exams for Medical Professionals
    September 6, 2023
  • Medical Innovations
  • News
  • Wellness
  • Tech
Search
© 2023 HealthWorks Collective. All Rights Reserved.
Reading: The Importance of Patient Advocates for Orphan Drugs
Share
Sign In
Notification Show More
Aa
Health Works CollectiveHealth Works Collective
Aa
Search
Have an existing account? Sign In
Follow US
  • About
  • Contact
  • Privacy
© 2023 HealthWorks Collective. All Rights Reserved.
Health Works Collective > eHealth > Mobile Health > The Importance of Patient Advocates for Orphan Drugs
Mobile Health

The Importance of Patient Advocates for Orphan Drugs

Eileen O'Brien
Last updated: 2013/04/19 at 7:39 AM
Eileen O'Brien
Share
2 Min Read
SHARE

I attended the World Orphan Drug Congress last week in Washington, DC, and Siren presented the workshop, “A Roadmap for Patient Advocacy Investment.” In the rare disease space, patient engagement is critical to every step of a drug’s development, including: filling clinical trials, getting FDA approval, obtaining reimbursement, getting patients diagnosed and promoting adherence.

I attended the World Orphan Drug Congress last week in Washington, DC, and Siren presented the workshop, “A Roadmap for Patient Advocacy Investment.” In the rare disease space, patient engagement is critical to every step of a drug’s development, including: filling clinical trials, getting FDA approval, obtaining reimbursement, getting patients diagnosed and promoting adherence.

Wendy White moderated with presentations from Jamie Ring of Genzyme, a Sanofi Company and Diane Goetz of PTC Therapeutics. Pat Furlong of Project Muscular Dystrophy and Lori Sames of Hannah’s Hope Fund provided the patient advocacy perspective. The event was overflowing with attendees–a mix of representatives from biopharmaceutical companies and advocacy organizations. Liz Donohue from Coordination of Rare Diseases at Sanford (CoRDS) shared her takeaways.

More Read

Ideal Wellness Tips For Seniors To Live Healthy And Happy

Why Ambulatory Surgery Centers Are The Future Of Ambulatory Care
A Detailed Guide On Developing A Female Healthcare Tracking App
The Top Trending Health Care Apps In 2020
What Will 5G Mean For Healthcare?

Megan O’Boyle from the Phelan-McDermid Syndrome talked about her highlights.

Lori’s recommendation to other patient advocates on how to work with pharma.

See Siren’s YouTube channel for more videos from the World Orphan Drug Congress including a review of the importance of patient registries.

TAGGED: ePatient, orphan drug, patient advocacy, pharma, world orphan drug congress

Sign Up For Daily Newsletter

Be keep up! Get the latest breaking news delivered straight to your inbox.
By signing up, you agree to our Terms of Use and acknowledge the data practices in our Privacy Policy. You may unsubscribe at any time.
Eileen O'Brien April 19, 2013
Share This Article
Facebook Twitter Copy Link Print
Share
Previous Article surgical complications Hospitals Make Money from Complications – And Here’s Why
Next Article Image Person-Centered HealthCare: Medication Adherence

Stay Connected

1.5k Followers Like
4.5k Followers Follow
2.8k Followers Pin
136k Subscribers Subscribe

Latest News

workplace first aid training
First Aid Training Enhancing Workplace Health and Safety
Health September 25, 2023
Anxiety Disorder
The Importance of Nutrition in Anxiety Disorder Treatment
Anxiety September 24, 2023
spinal health
How to Advocate For Your Spinal Health In A Healthcare Setting: Strategies From Dr. Brandon Claflin
News September 24, 2023
Medical Surveys
Beyond the Clinic: Medical Surveys Are a Roadmap to Passive Income for Doctors
Health September 23, 2023

You Might also Like

healthcare apps and technology
eHealthMobile HealthTechnology

Technologies That Can Help You Keep Track of Your Health

June 18, 2021
healthcare app development
eHealthMobile Health

Why Should a Healthcare Company Create Their Own App?

May 6, 2021
can AI protect healthcare workers
Artificial IntelligenceCovid-19eHealthHealth careMobile HealthTechnology

How Can AI Protect Healthcare Workers From COVID-19 Transmission?

October 27, 2020
advances in telehealth
eHealthMobile Health

Advances In Telehealth In 2020 You’ll Want To Know About

September 28, 2020
Subscribe

Subscribe to our newsletter to get our newest articles instantly!

Follow US
© 2008-2023 HealthWorks Collective. All Rights Reserved.
  • About
  • Contact
  • Privacy
Welcome Back!

Sign in to your account

Lost your password?