Martin Hanley
Board of Trustees
New Zealand Organisation for Rare Disorders
New Zealand
Biography
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.
Research Interest
Rare diseases treatment, orphan drugs, rare diseases
