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Rare Disease & the Pandemic



ICON's Center for
Rare Diseases & CISCRP
Present 2 Flash Webinars

Moderated by Scott Schliebner,  SVP, Scientific Affairs & Therapeutic Expertise Head, Center for Rare Diseases, ICON

Supporting Caregivers in Clinical Research:
Navigating the Pandemic

15-MINUTE FLASH WEBINAR 1

15-MINUTE FLASH WEBINAR 2

Part 1 of 2

Part 2 of 2

Wednesday, October 20th at 12PM EDT

The Trifecta lived daily by Rare Disease families is now experienced by the whole world: 1) Isolation, 2) Medical Uncertainty, 3) Disruptions in Home/Work Life. Scott Schliebner of ICON & Cristol Barrett O’Loughlin of Angel Aid Cares will discuss how caregivers are navigating the impact of these three forces for the whole family.

Wednesday, December 15th at 12PM EST

Scott & Cristol continue their conversation about supporting caregivers in clinical research through the lens of the pandemic’s impacts.

Moderator
Scott Schliebner, SVP, Scientific Affairs, Therapeutic Expertise Head, Center for Rare Diseases, ICON

Mr. Schliebner is a clinical development executive with a 25-year background focused on rare diseases, innovation, and patient-focused approaches to drug development.  He is passionate about reducing the burden of clinical trial participation and leveraging novel approaches and technologies to bring new therapies to patients faster.  Mr. Schliebner also serves as the Co-Chair of Global Genes’ Corporate Alliance, serves on the Board of Directors for Uplifting Athletes, and supports several rare disease panels and committees.  He holds a Master’s Degree in Public Health (MPH) from the University of Utah School of Medicine, and completed a Graduate Research Fellowship at The National Institutes of Health.

Panelist
Cristol Barrett O’Loughlin, Founder & CEO, Angel Aid Cares

Cristol Barrett O’Loughlin is a seasoned executive and storyteller. As Founder and CEO of Angel Aid Cares, Cristol is fiercely passionate about providing social, emotional, physical and financial relief to mothers of children with rare disease. A former UCLA instructor, she co-founded the advertising firm, The Craftsman Agency, and is humbled to advise global brands; NBA, Disney, Fox, Cisco Systems and Google. During her tenure at IBM Life Sciences, she helped accelerate advancements in cheminformatics and biotechnology. Watch her TEDx talk “Caring for the Caregivers: 3 Tools for Self-Care” here.

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 

Missy Hansen

Missy Hansen MSN, APRN, CPNP, CPHON, joined ICON in 2019 as a pediatric strategy liaison. She has 25+ years of experience as a pediatric nurse practitioner, including 17+ years in pediatric hematology/oncology at Children’s Minnesota, the largest hematology/oncology service line in the region, providing care for infants through young adults diagnosed with hematologic and/or oncology conditions. Ms. Hansen gained expertise working in inpatient, outpatient, and urgent care type settings. Ms. Hansen has in-depth experience working with the Children’s Oncology Group—the largest consortium with the most open pediatric studies around the world. She also has experience working with other consortia that conduct trials for pediatric to young adult patients.