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CITY ANNOUNCED: Living Rare, Living Stronger 2020 will be rockin’!

We are excited to announce that NORD is headed to Cleveland, Ohio for our 2020 Living Rare, Living Stronger Patient and Family Forum. What’s even more exciting–the Rare Impact Awards, included in this event, will be hosted at the Rock & Roll Hall of Fame!

Stay tuned as we release more information about the Forum in the months ahead.


2019 Living Rare, Living Stronger NORD Patient & Family Forum

The 2019 Living Rare Forum in Houston brought the rare community together with physicians, medical students, advocates and other supporters for a program of learning, sharing and connection – plus fun! On Saturday, June 22, in conjunction with the Forum, NORD hosted its annual Rare Impact Awards, bringing attendees together to celebrate those making extraordinary contributions to the lives of people living with rare diseases. This year the event was held at Space Center Houston. View honorees.

Click here for a recap of the event and enjoy the photo gallery below.


Thanks to NORD’s Living Rare, Living Stronger Advisory Board

NORD would like to extend our appreciation to the 2020 Living Rare, Living Stronger Advisory Board members who assisted with the program and its varied elements. Their dedication, time and insights help to assure a program that is timely, relevant and meaningful to all members of the rare disease community.

Charlene York, NORD Rare Action Network Ohio Rare Action Network Volunteer State Ambassador
Mike Porath, NORD Board of Directors; The Mighty Member; CEO
Caroline Kruse, Platelet Disorder Support Association, President and CEO
Tauna Batiste, Batten Disease Support & Research Association (BDSRA), Executive Director
Rebecca Gallis, RN, CMTC Alliance and caregiver President
Amy Shealy, Cleveland Clinic Genetic Counselor
Sudipto Mukherjee, MD, PhD, MPH, Lerner College of Medicine at CWRU; Cleveland Clinic Taussig Cancer Institute Assistant Professor; Department of Hematology and Medical oncology
Alice Chen, MD, NIH NCATS Medical Officer
Jaime Tan, Central Michigan University
Jonathan Haines, PhD, Case Western Reserve University Mary W.Sheldon MD Professor of Genomic Sciences and Chair
David Flannery, MD, Center for Personalized Genetic Healthcare, Genomic Medicine Institute, Cleveland Clinic Director of Telegentics and Digital Genetics

Key Contacts

General Inquiries: [email protected]
Sponsorship Inquiries: Alexa Moore at [email protected]
Media Inquiries: Laura Mullen at [email protected]