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Jun. 27, 2019

TOPIC: Events, Get Involved, Patients & Members

NORD’s 2019 Living Rare, Living Stronger Weekend Highlights

Posted by Lisa Sencen

We would like to extend our sincerest thanks to all those who joined us during the Living Rare, Living Stronger NORD Patient & Family Forum, June 21-23 in Houston. Over 500 individuals came out for a weekend filled with learning, sharing, bonding and fun. Our hope is that this event provided the tools, information and support needed for everyone to live their best rare life.

We would not be able to present an event of this kind without the Living Rare Forum Advisory Committee, speakers, sponsors and media partners. Their hard work, insights and talent were integral to the success of this special event. We are truly grateful for their involvement in 2019.

NORD’s Living Rare Forum is a traveling event and we are looking forward to visiting a different city in 2020. We hope you will join us! Stay tuned for more details coming soon.


Weekend Highlights

Click here to view a selection of photos from the weekend

Weekend-long learning

Through educational programming on Saturday and Sunday, attendees were immersed in topics of their choosing. Caregivers came together to learn how to better support themselves and their rare loved ones, long-term survivors shared life hacks and resources, medical professionals and students spent their time better understanding the community for improved care and newly diagnosed patients got the tools needed to live their new normal.

Three days of fun

Hundreds of zebras kicked up their heels with a BBQ, Western line-dancing, selfie stations and the big event, NORD’s Rare Impact Awards. Retired NASA astronaut Colonel Kenneth Cameron welcomed us to Space Center Houston, emcee Mary Lou Retton energized the crowd with her spirit, and NORD honored 17 individuals and companies for the extraordinary work they’ve done to support people living with rare diseases.

#LivingRareForum online

Hundreds of tweets, snaps and posts were shared throughout the weekend, connecting not only 500 in-person attendees, but even more people online. NORD was honored to host select content from the Living Rare Forum and Rare Impact Awards on Facebook Livereaching over 5,000 individuals. Keep the conversations going! What was your favorite part of the weekend? Share using the hashtag #LivingRareForum.

Join us again!

We look forward to seeing you at a future NORD event! Save the date for our annual Rare Diseases and Orphan Products Breakthrough Summit, October 21-22 in Washington, DC. You can also check out NORD’s Rare Action Network site to find an event in your local community.


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

NORD would like to extend our appreciation to the 2019 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.

Alice Chen, MD, National Center for Advancing Translational Sciences, NIH
Xenia Chepa-Lotrea, NIH/NHGRI Undiagnosed Diseases Program
Susan Fernbach, RN, Baylor College of Medicine
Susan Hedstrom, Foundation for Prader-Willi Research & NORD Board of Directors
Brendan Lee, MD, PhD, Baylor College of Medicine
Pilar Magoulas, MS, CGC, Baylor College of Medicine
Mike Michaelis, OMS Life Foundation
Debra Regier, MD, PhD, Children’s National Rare Disease Institute & Children’s National Health System
Harjot Singh Randhawa, MD, School of Medicine, American University of Integrative Sciences
Deborah Skolaski, NORD Rare Action Network Texas State Ambassador
Reid Sutton, MD, Baylor College of Medicine & Texas Children’s Hospital
Monica Weldon, Bridge the Gap – SYNGAP – Education and Research Foundation
Marsha Zimmerman, Acid Maltase Deficiency Association