International support for NZORD
DC Outreach is based in New York and supports families with the rare condition Dyskeratosis Congenita. The organisation sent a letter in support of the work NZORD does for all patients and their families living with a rare disorder in New Zealand.
A copy of the letter has been sent to Prime Minister Jacinda Ardern, as well as Minister of Health David Clark.
"If groups like NZORD begin to disappear, so does the rare patient's voice, if they lose their voices, they lose their lives. It is so hard to gain support for a disease so rare, but if we rare patients and groups have a place like NZORD to collectively make our voices hear, there can and will be progress."
Katie Stevens, Executive Director, DC Outreach, Inc.