NZORD Press Release

22 May 2015

Yesterday, founder and Executive Director, John Forman, announced that he is stepping down from his current position with the New Zealand Organisation for Rare Disorders. NZORD is a not-for-profit that exists to inform and support rare disease families, improve their journey through the health and disability system and promote research into rare diseases.

On announcing his resignation John Forman said “It is 16 years since I began developing NZORD and it is now time to hand over the reins.  I’m immensely proud of the many gains that NZORD and its network of rare disease groups have made over the past decade and a half.”

Lucy Elwood, Chair of the NZORD Trust Board said “John Forman has been an amazing driving force, and the Board wishes to thank him for all of his efforts in improving the life of rare disease patients and their families. John will be greatly missed, not just by his team at NZORD but also by the 160 plus rare disease groups that our organisation supports.  He should feel very proud, he has grown an organisation that will continue for many years to come and has made a huge difference in the lives of many New Zealanders.”

John is stepping away from management to focus on research and international rare disease interests.   He is the current President of ICORD (the International Conference on Rare Disease and Orphan Drugs), a Trustee of Rare Voices Australia and Vice President, Research of ISMRD (the International Advocate for Glycoprotein Storage Diseases).  He is also the Chair of Lysosomal Diseases New Zealand.

NZORD will shortly begin a recruitment process for a Chief Executive to succeed John to ensure that it continues to have strong leadership.

Lucy Elwood
Chair, NZORD