Skip to content

Webinar Series: Navigating Rare Disease & Clinical Research - Every Patient Matters

What exactly is clinical research, and what does it mean to participate in a clinical trial? An informative series for patients, parents, & caregivers.

Register for our FREE 3-Part educational webinar series on

Wednesday, March 10th from 12PM – 1PM EDT

Wednesday, June 9th from 12PM – 1PM EST

Wednesday, November 11th from 12PM – 1PM EDT

These programs are made possible by a sponsorship from Applied Therapeutics.

Learn about the differences between receiving medical care & participating in a clinical research study.

In a friendly and live conversational format, this free webinar series will discuss:

  • What is clinical research?
  • How is it different from receiving medical care from your family physician or pediatrician?
  • What are different stages of a clinical trial?
  • What happens before, during and after the clinical trial?
  • Who is monitoring for safety and potential side effects?
  • What role does the FDA play in clinical trials
  • And many more important topics.

You will hear from medical professionals, parents, caregivers and patients who will share their experiences with clinical research in this webinar series.

PART 1: Rare Disease Clinical Trials: Being Informed, Wednesday, March 10th from 12PM – 1PM EDT

Moderated by Christian Rubio, Vice President of Strategic Advancement, Global Genes

  • General Overview of the Clinical Research Process (2-minute video)
  • Clinical Research Overview Presentation – Topics to include:
    • What to expect before, during and after the trial?
    • What happens when the trial starts and at the first clinical site visit?
    • Different stages of the clinical trial
    • What is a placebo and how does it impact clinical trial participation?
    • Who is monitoring the trial for safety and side effects?
    • What role does the FDA play in clinical trials
  • Facilitated Conversation with Panelists
    • Details to follow

Panelists:

  • Details to Follow

PART 2: Wednesday, June 9th from 12PM – 1PM EST

  • Clinical Research: Next Steps

PART 3: Wednesday, November 10, from 12PM – 1PM EDT

  • Clinical Research: After Participation, Paying It Forward

To access more educational content about clinical trials and clinical research participation, click here.

Drugviu

Click on the resources listed below to download the full versions of Drugviu’s materials. 

Pandemic Response Network Flyer: English

Red de Respuesta a una Pandemia: Español

Peer Plus

Click on the resources listed below to download the full versions of these materials. 

Peer Plus: Mission and Capabilities

Latino Union of Chicago

Click on the resources listed below to download the full Latino Union of Chicago Annual Report. 

 

Advocate Aurora Health

Click on the resources listed below to download the full versions of Advocate’s materials. 

  • Dominantly Inherited Alzheimer’s Network Trial Unit 

Dominantly Inherited Alzheimer’s Disease Brochure
Expanded Registry Flyer (English)

Enfermedad de Alzheimer de herencia dominante
Expanded Registry Flyer (Spanish)

  • Clarity AD Clinical Study Information

Forgetting the Little Things
Concerned About Memory Loss?

   

Allergy & Asthma Network

Click on the resources listed below to download the full versions of the Allergy & Asthma Network’s materials. 
 

Institute for Population and Precision Health (IPPH)

Click on the resources listed below to download the full versions of IPPH’s materials. 
 

Einstein Healthcare Network

Click on the resources listed below to learn more about Einsteing Healthcare Network’s resources. 

TREND Community

Click on the resources listed below to download the full versions of the TREND Community’s materials. 

 

Community Voice Report July 2020: COVID-19 Positive

 

Community Voice Report August 2020: Pericarditis

Fox Chase Cancer Center - Temple Health

Click on the resources listed below to download the full versions of the Fox Chase Cancer Center’s materials. 
Be the Breakthrough: Understanding Clinical Trials

Allergy & Asthma Network

Click on the resources listed below to download the full versions of the Allergy & Asthma Network’s materials. 
 

Lung Cancer Initiative of North Carolina

Click on the resources listed below to view the full versions of LCI’s materials. 

Lung Cancer Risk Assessment Handout

PRA Health Sciences

Click on the resources listed below to view the full versions of PRA’s materials. 

Duke Health

Click on the resources listed below to view the full versions of Duke’s materials. 

Visit Discover Duke Research on Facebook

Download the handout below in English or Spanish

North Carolina Clinical Research

Visit North Carolina Clinical Research’s website