Rare Diseases International 5th Annual Meeting

Our next Annual Meeting will be on February 20, 2019 in New York, USA  

This will be a unique opportunity to learn from and share with other patient advocates and rare disease stakeholders from around the world  

Register now!


  • 8:30-10:30 AM EST Rare Diseases International Morning Session (for RDI members only): General Assembly and Membership Meeting
  • 11:00 AM-12:30 PM EST: Global Commission launch meeting (RDI members invited)
  • 1:00 PM – 2:00 PM EST: Lunch for RDI members and Global Commission attendees (in the same venue)
  • 2:00-3:30 PM EST and 4:00-5:30 PM EST Afternoon Sessions (open to all): Interactive sessions to understand, discuss and get further involved in Rare Diseases International’s advocacy plans and activities.

RDI members attending our Annual Meeting are also invited to attend the official launch of the Global Commission to End the Diagnostic Odyssey of Children with a Rare Disease’s (“The Global Commission”) digital roadmap for shortening the time to diagnosis for children with rare diseases worldwide. The Global Commission is a multidisciplinary group of experts formed by Shire, Microsoft and EURORDIS-Rare Diseases Europe with the creativity, technological expertise and commitment required to accelerate time to diagnosis and make a major difference in the lives of millions of children and their families.


Wednesday, February 20, 2019



Microsoft Offices Headquarters, Times Square, New York City

Both the RDI Meeting and Global Commission launch event, will take place the day before the Second High-Level Policy Event of the NGO Committee for Rare Diseases being held on February 21 at United Nations Headquarters in New York City.  This event has a limited number of spaces available. If you are interested in attending , please contact the Secretariat of the NGO Committee for Rare Diseases at [email protected]

We hope to see you in New York for these exciting events for global Rare Disease stakeholders all over the world

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.European Conference on Rare Diseases An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases