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Event Details

Living Rare, Living Stronger is an annual patient-focused conference held in a different location each year. Its agenda provides patients and families with practical tools for living their best lives with rare diseases and physicians and medical students with insights to take back to their practice and studies. It is also an opportunity for bonding and fun, with children’s programming, a Family BBQ and a dedicated wellness room.

2020 Event Locations

Living Rare, Living Stronger Forum Hotel

The Renaissance Cleveland Hotel
24 Public Square
Cleveland, OH 44113
To book your discounted conference room rate please visit: Renaissance Cleveland Hotel by April 25 2020

Rare Impact Awards Ceremony Location

Rock & Roll Hall of Fame
1100 E 9th St
Cleveland, OH 44114


Early Bird Rate (exp 3/20/20)Standard Rate (by 5/13/20)Onsite Registration
Patient / Caregiver / Representative of NORD Patient Organization Member / Student$125$150$225
Professional Advocate / Academic / Physician / Government$250$275$350
NORD Corporate Council Members$1,400$1,600$2,000
Industry (Pharma, Service Providers, Co-Pay Foundations)$1,600$1,800$2,200
  • Children ages 12 and under are welcome to attend but strongly encouraged to participate in the childcare center. All children ages 12 and under are $99 each.
  • Pricing includes all of the weekend activities (Thursday welcome reception, conference on Friday, Rare Impact Awards on Friday night and a brunch on Saturday). Credit Card (Visa, MasterCard, AMEX, Discover) are accepted.
  • All advertised discounts are taken from the full, standard rate

NORD is pleased to offer travel and lodging scholarship assistance to qualified individuals to attend our event. The application window will open in early February, please check back for further information.

Substitution and Cancellation

Any cancellations received in writing on or before May 1, 2020 will be refunded. Any cancellations received in writing between May 2 and May 13 will be refunded 50% of the registration cost (maximum retained for an administrative charge will be $250). No refunds will be made after May 13, 2020. Your registration may be transferred to another member of your family or organization up to 24 hours in advance of the forum. In case of a conference cancellation beyond our control**, you will receive a refund for your conference registration fee only. NORD reserves the right to alter this program without prior notice. Please note: speakers and agenda are subject to change. In the event of a speaker cancellation, every effort to find a suitable replacement will be made.

**Events beyond our control include: severe weather conditions, natural and man-made disasters and any other similar events. Patients and caregivers who are unable to attend due to medical emergencies are not required to pay an administration fee