Seven-year-old Gabrielle from Nelson has an extremely rare progressive bone marrow disorder called dyskeratosis congenita. Photo: www.rarediseaseday.org.nz
The Labour led government's being accused of back tracking on promises to fund drugs for sufferers of rare diseases and stonewalling campaigners who want to know why. In a second blow to the organisation they've just heard from the Ministry of Health that their operational funding will be pulled just four months before their contract with them is renewed.
Collette Bromhead who is the Chief Executive of The New Zealand Organisation for Rare Diseases says it's a double whammy that came out of the blue.
The Health Minister Dr David Clark also talks to Kathryn Ryan.
