Greetings from the NZORD Chief Executive
I am reminded every day of the huge challenges faced by our rare disorder community and of the enormous need for solutions, progress and action. Thank you to all the amazing people who have shared their stories through our Stories Project – they are beautiful and painful and empowering all at once. I encourage everyone to read these experiences and to contribute your own stories as patients, parents, carers, researchers, clinicians, friends or neighbours.
NZORD has been actively meeting with politicians, PHARMAC and other influencers pushing for answers to the big questions: Where is NZ’s policy on rare disorders? And where is the funding at for rare disorder medicines? Since NZORD continues to be blocked from meeting the Health Minister, Hon David Clark, I can only surmise that he is embarrassed by what his Ministry has done for patients with rare disorders – nothing.
We continue to negotiate with the Ministry of Health for our all-important core funding and see the value that they place on NZORD, as the only umbrella organisation for all rare diseases in NZ, as a reflection of the value they place on rare disorder patients.
In the meantime, please check out our new webpage with guidance on setting up support groups – there's valuable information for existing support groups as well.
Dr Collette Bromhead