August 2018 newsletter
Here is the link to our very latest newsletter.
Rare Disease Epidemiology - 2nd Edition
In mid-2017, John was invited to write a preface for a book called Rare Diseases Epidemiology, which concentrates on the work done for LDNZ and ISMRD and talks about what patient advocates can achieve.
LDNZ Performance Report for 2017 can be found here.