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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 (recording coming soon)

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

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

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

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

Webinar Recording Coming Soon

Christian Rubio WOW1

Moderator
Christian Rubio,
VP of Strategic Advancement,
Global Genes

dr. dastgir wow1

Panelist
Dr. Jahannaz Dastgir, DO
Director, Pediatric Neuromuscular Program,
Goryeb Children’s Hospital

Melanie Havert WOW1

Panelist
Melanie Havert,
Project Manager,
Rare Patient Voice, LLC

Jennifer McNary wow1

Panelist
Jenn McNary,
Founder & Patient Advocate,
One Rare

Stephanie Loomer Headshot wow1

Presenter
Stephanie Loomer,
Project Manager,
CISCRP

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