NZORD is headed by Executive Director John Forman, and steered by a Board of Trustees.

John Forman, NZORD Executive Director
John is a parent of adult twins who both have a rare genetic disorder, Alpha-Mannosidosis. He has a long history as a volunteer and as a paid worker in disability services and related advocacy agencies. He is enthusiastic about the use of modern technology to reduce isolation and improve the health of those affected by rare diseases. John is on the Board of several local and international rare disease and advocacy organisations.

NZORD Board of Trustees

Chris Hodson QC, NZORD Board Chairman
Chris practised as a barrister and solicitor in Masterton and Wellington before joining the independent bar in 1990. He has for 20 years specialised in medico-legal cases. He appeared as counsel for the Life Sciences Network before the Royal Commission on Genetic Modification and was elected as chair of NZORD in 2001. He lives in Wellington and is married to the Hon Justice Lowell Goddard; they have a grown-up family of four and four grand-children.

Bronwyn Gray
Bronwyn is a Justice of the Peace for New Zealand and a Trustee for the Auckland Women's Loan Fund. She was a Secondary School English teacher for 25 years in Auckland and Wellington. Her daughter Lisa was diagnosed in 1997 with a rare lung disease Lymphangioleiomyomatosis. Bronwyn is a Director and Founder of the New Zealand LAM Charitable Trust, and since 2001 is the full time administrator for the Trust, raising funds for scientific investigation into the causes of LAM and ultimately to find a cure for the condition.

Dr Michael Sullivan MB ChB, DCH, FRACP, PhD
Michael is a Consultant Paediatric Oncologist in the Children's Haematology Oncology Centre, Canterbury, and a Senior Lecturer in Paediatric Oncology, at the University of Otago. He has a particular research interests in the molecular genetics of childhood cancers and developmental disorders in children. Michael is NZORD's medical advisor.

Gillian Deane
Gillian has a history of involvement as an arts patron and supporting voluntary organisations. She is currently on the board of Mary Potter Hospice and was on the board of the Middlemore Hospital Research Trust, until 2005. She is joint Patron of IHC New Zealand. Gillian is the co-ordinator of the New Zealand Rett Syndrome support group. Her daughter Kristen was diagnosed with Rett syndrome and died at age 26. In her spare time, Gillian has revegetated a wetland that is now a natural heritage area.

Anita Nicholls
Anita is the mother of two young children with Fragile X Syndrome. She has a BSc in Geography and a Diploma in early childhood education. Anita is involved in several community organisations, including a New Mothers' Support Group, the Autistic Association and the NZ Fragile X Trust.

Mike Eccles PhD
Dr Mike Eccles is Associate Professor in Pathology at the University of Otago, with a background in Biochemistry and Genetics. His laboratory employs seven researchers and is focused on the genetics of cancer and kidney diseases in childhood. Outside work, his time is mostly occupied with family; his wife works as a General Practitioner, and they have three school-age children.

Martin Hanley
Martin has an adult son with a rare genetic skin condition, Epidermolysis Bullosa, EB, that causes the skin to blister and tear with the slightest friction. As well as hours every day of bandaging and caring for his son when he was younger, Martin has spent years negotiating the health and education systems on behalf of his son and the EB support group DEBRA NZ. Martin is a partner in Red Design Architects with his wife Anna Kemble Welch, and a part time tutor in design at the School of Architecture. He is also involved in organising the Newtown Festival each year, and assisting the Newtown Resident's Association on urban design and resource management issues and with community liaison while the new Wellington Regional Hospital is being designed and built.

Linda Clark
Linda Clark joined Radio New Zealand’s flagship Nine to Noon news and current affairs programme in 2002 after taking time out from television to have twins. Linda's career as a journalist spans 20 years in print, television and radio. She has won more than 20 journalism awards for her work in both print and television, mainly for her coverage of political and foreign affairs events. In 2006 Linda took on the role of Deputy Chair for NZORD.