Events /

Virtual and In-Person – NORD Living Rare Forum


Saturday, May 6, 2023    
9:00 am - 4:00 pm


Renaissance Washington D.C. Downtown Hotel
999 Ninth Street NW, Washington, District of Columbia

Event Type

An annual, patient-focused hybrid conference giving people living with rare diseases and their families practical tools for living their best lives with rare diseases

Join the National Organization for Rare Disorders (NORD) for the 2023 Living Rare Forum on May 6 from 9 a.m. to 4 p.m.

Individuals may attend virtually or in-person at the Renaissance Washington D.C. Downtown Hotel, 999 Ninth St. NW.

This patient and family-focused event will provide connections, real stories and practical knowledge to help you and your loved ones live your best rare life.

Topics will include:

  • A keynote speaker who will share her story of being diagnosed with two rare disorders
  • Exploring ways to navigate life while coping with uncertainty
  • Coping mechanisms and approaches to overcoming barriers for adults with rare disorders
  • How to participate in rare disease research
  • New innovations that are helping advance the diagnosis, treatment and care of rare disease patients

The Living Rare Forum is free for patients and caregivers.

You can  see the full agenda for more details.

Find the event pricing and sign up at