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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.

2019 Event Locations

Living Rare, Living Stronger Forum Hotel

Hilton Americas-Houston
1600 Lamar Street
Houston, TX 77010

Rare Impact Awards Ceremony Location

Space Center Houston
1601 E NASA Parkway
Houston, TX 77058


Early-Bird Rate (expires 4/26/19)Standard Rate (expires 6/20/19)Onsite Registration Rate
Patient / Caregiver / Representative of NORD Patient Organization Member / Student$100$125$200
Professional Advocate / Academic / Physician / Government$225$250$325
NORD Corporate Council Members$1,300$1,500$1,900
Industry (Pharma, Service Providers, Co-Pay Foundations)$1,500$1,700$2,100
  • Children under 12 are free for the conference but childcare will be available for a rate of $69.
  • Registration fee includes Friday dinner, Saturday breakfast, lunch and dinner and Sunday breakfast and conference materials.  Credit Card (Visa, MasterCard, AMEX, Discover) are accepted.
  • All advertised discounts are taken from the full, standard rate

Substitution and Cancellation

Any cancellations received in writing on or before June 7, 2019 will be refunded. Any cancellations received in writing between June 8 and June 20 will be refunded 50% of the registration cost (maximum retained for an administrative charge will be $250). No refunds will be made after June 20, 2019. 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.