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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 Part 3 of our FREE educational webinar series on

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

Please scroll down to learn about Parts 1 and 2 of this informative webinar series.

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

  • Rare Disease Clinical Trials: After Participation, Paying It Forward

Hear from 4-5 different clinical trial participants on how they chose to become advocates to share their experiences in different ways in order to help others through the clinical trials journey and “pay it forward”.

 

 

 

Webinar Moderated by Britta Dornan, Senior Director of Communications & Marketing, EveryLife Foundation for Rare Diseases.

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

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Moderator
Christian Rubio,
VP of Strategic Advancement,
Global Genes

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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

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Panelist
Jenn McNary,
Founder & Patient Advocate,
One Rare

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Presenter
Stephanie Loomer,
Project Manager,
CISCRP

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

  • Rare Disease Clinical Trials: How to Prepare for When the Clinical Trial Ends

Learn about clinical trials, what it means to participate, and what happens when the clinical trial is completed

Moderator: Marsha Lanes, Genetic Counselor/Medical Editor, NORD (National Organization for Rare Disorders)

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Moderator
Marsha Lanes,
Genetic Counselor/
Medical Editor,
NORD

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Panelist
Dr. Tracy Dixon-Salazar,
Executive Director,
Lennox-Gastaut
Syndrome Foundation

Panelist
Richie Kahn, MPH
Senior Director,
Patient Engagement,
Medable Inc.

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Panelist
Dana Holinka,
Operating Board Member,
TSC Alliance

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