EVENT 29 JANUARY: A Rare Disease Registry for NI, Riddel Hall

Improving Rare Disease Education and Information

Riddel Hall, Belfast, 29th Jan 2018

Join us for our next big event in Riddle Hall on Monday 29th January where we will discuss how recent developments have led to unique opportunities for individuals living and working with rare diseases in Northern Ireland.

Two priorities from the NI rare disease implementation plan include:

(1) Developing a rare disease registry, and

(2) Improving education / access to information resources in NI

To help progress these rare disease priorities, a series of short talks will be followed by facilitated discussions to identify targets for rare disease progress in NI, alongside barriers and strengths for implementation.

This event is designed in two halves so individuals are welcome to attend any of all of the following sessions:

a) Morning session (9.30 am – 1.15 pm) focused on developing a rare disease registry for NI.

b) Afternoon session (2.15 pm – 5 pm) focused on improving educational and information resources for rare diseases.

c) All day – lunch provided; we welcome everyone’s input as much as possible!

We encourage you to book your space today via the link below as registry will be closing soon.