RDNZ has a small team of dedicated staff who work part-time from our Wellington office. 

Our staff

Chris Higgins, Chief Executive

Chris began his career as a health services researcher and his background since then includes senior management roles with the Northland, Waikato and Lakes health boards, and leadership roles in a variety of community, not for profit and advocacy organisations, including Presbyterian Support (Northern), Spectrum Care, Brain Injury Auckland, Muscular Dystrophy NZ and New Zealanders for Health Research. He has also served as an RDNZ Board Trustee. He has a Masters degree in political science and a post graduate diploma in health services management. Outside pursuits include cruising on his Triumph Speedmaster, and he’s also a word nerd who loves a good game of competitive Scrabble.

Kim McGuinness, Relationship Manager

Kim has a strong background in the not-for-profit sector and a passion for helping people living with chronic conditions. This includes as a volunteer and past board member of Cystic Fibrosis New Zealand. She has successfully built strong sustainable relationships with clinical and non-clinical stakeholders to help deliver a wide range of projects and events that make a difference to patient’s lives. 



Lewanna Pentecost, NavigatorLewanna

Lewanna has a background in the health sector and more recently in the social sector. She is passionate about health equity and reducing the barriers faced by people trying to access social and health support. Lewanna is returning to the working world after four years at home with her two young daughters. When not working, Lewanna is busy enjoying the outdoors with her family and dog.



Angela Nielsen, Communications Manager 

Angela comes from a background in the not-for-profit and social enterprise sectors, predominantly working in advocacy and communications roles. She has a Master’s degree in Development and International Relations and is passionate about advancing causes that have a positive social impact.


Maurice Roberts, Business Development Manager

Maurice comes from a solid background in grant writing including The Wellington City Mission and Arthritis NZ, and a host of other charitable trusts as a volunteer. He has a degree in economics, and brings a macro and micro lens to his grant writing. He greatly enjoys working with the funders as they are keen to work with organisations in our local communities and together we make a difference. To relax he loves playing golf, and is a member at Miramar links – he is very open to discussing his role over 18 holes.


Susan Langston, Business Manager

Susan joins RDNZ with a strong background in finance and office management and a passion for the non-profit sector. She has volunteered with various organisations including the Samaritans, Mary Potter Hospice, Houghton Valley Playcentre, as well as on the parent associations of several schools over the last 20 years. In what spare time she has, she can usually be found walking her Jack Russell terrier, Freddy, around the south coast of Wellington.




Alanna Peck, South Island Representative Alanna Peck

Alanna has been volunteering for Rare Disorders NZ for many years, as well as being an active part of the 22q Foundation in Australia and New Zealand. She is a mum to four children, two of whom live with a rare disorder, so she understands the challenges of caring for someone with a rare disorder and has excellent insight and personal experience of navigating the health system and other services. Alanna is also an active member of her community, volunteering and helping where needed.


Gemma Aitchison, Fundraising Manager 

Gemma has a strong background working in fundraising, marketing and communications in the not-for-profit sector and is passionate about making a difference and helping charitable organisations meet their fundraising goals.



Alexandra Nicholson, Administration Officer 


Board of Trustees 

The RDNZ board is made up of volunteers who meet four times a year (twice in person; twice through virtual meetings) to govern the organisation's activities. 

James McGoram, ChairJames McGoram, Chair

James is a digital designer and online business consultant. He has his own agency, developing websites and applications, running digital marketing campaigns and helping clients to understand how to prosper online.

James has a wide range of experience in governance roles and is excited by the chance to use his skills to assist RDNZ in its mission, both now and in the future.


Stephen Robertson

Stephen has been the Curekids Professor of Paediatric Genetics at Otago University, since 2003. He studied medicine and specialised in pediatrics and then subspecialised in clinical genetics. From 1999 to 2002 he was Nuffield Medical Fellow at the Institute of Molecular Medicine at Oxford University, studying the genetic basis of a set of genetic disorders characterised by severe life-limiting malformations in children. His work in this area has led to the implication of several genes, in the generation of malformations in children, with a particular focus on conditions that affect the skeleton and brain. He was awarded the Health Research Council’s Liley Medal for outstanding contributions to medical research in 2010. Stephen continues to be an active clinician, staffing clinics throughout the South Island, in addition to teaching genetics to science and medical students in Dunedin. He joined the board of NZORD in 2013.

Rosemary Marks

Rosemary retired from her role as a Developmental Paediatrician at Starship Children’s Hospital in 2019. She holds honorary appointments at Starship and at the University of Auckland. Rosemary is passionate about improving service delivery to children and young people, especially those who have a disability. As president of the Paediatric Society of New Zealand Rosemary was involved in the establishment of the New Zealand Child and Youth Clinical Networks programme. Rosemary remains actively involved in this programme as a member of the Clinical Reference Group for the newest network for Child Disability. She is also committed to clear communication of accurate information for families about children’s health.

Bice Awan

Bice was the chief executive of Skylight a not for profit charitable trust until February 2015. Bice was Skylight’s first staff member when it began in 1998. Skylight was the first organisation in New Zealand to focus specifically on the multifaceted impact that change, loss and grief has on children, young people and their families. She focuses her activities in areas where there is a need for a voice to be heard around the challenges that exist within the area. Bice is on the Board of PADA (Perinatal Anxiety and Depression Aotearoa), and also the Board of SPCA where she is the Chair of its Animal Welfare Committee. She is a member of the Rotary Club of Wellington and joined NZORD Board in 2014. Bice became a Officer of the New Zealand Order of Merit in 2016 for services to mental health and rehabilitation.

Carol Gernhoefer

Carol is a Chartered Accountant who brings her business acumen to the NZORD board. She has extensive governance experience with not-for-profit organisations and is a board member of Independent Living Services, Stardome Observatory & Planetarium, and formerly Auckland Museum and SANDS Auckland Central. Carol is the founder and editor of Auckland for Kids, an online platform that inspires and enables families with children to enjoy Auckland. Carol lives with her family in Auckland and her eldest daughter has Osteogenesis Imperfecta. Carol joined the NZORD board in 2018. 

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 was being designed and built. Martin is a founding trustee of NZORD.

Awhina Hollis-English Awhina Hollis-English

Ko Tāwhiti-nui-a-Paoa te maunga, ko Horouta te waka, ko Taharora te marae,  ko Ngāti Porou te iwi.

Awhina lives in Hawkes Bay with her three children, one who has multiple medical complexities resulting from CMV. Awhina completed a PhD in Social Work at the University of Otago and worked as a Lecturer in Social Work at Massey University.  Her research focuses on Kaupapa Māori theory and practice.