Dyskeratosis Congenita Outreach Pacific
A new support group for the rare disease Dyskeratosis Congenita (DC) has been added to NZORD’s Rare Disease Support Group Directory.
“These groups are a vital way for people with experience of rare disorders to share knowledge and support,” says Dr Collette Bromhead, Chief Executive for NZORD.
DC is a genetic disorder that is either inherited or develops as a new mutation while inside the womb. DC can affect virtually any organ in the body, but usually targets the skin and nails, the bone marrow where blood cells are produced, the lungs and the gastrointestinal tract, including the liver. Patients with DC are also more at risk of developing certain types of cancers.
Dyskeratosis Congenita Outreach Pacific (DCOP) is a community of people in Australia and New Zealand linked by experience of this rare disease. They are a small group of patients, family members, medical specialists and other dedicated individuals who aim to raise community and clinical awareness of DC and provide support to those affected.
One DCOP Board member, Megan Stephens, is based in New Zealand. She joined the Board as her daughter Gabrielle, now 7, has DC. Gabrielle was diagnosed with severe bone marrow failure in 2014 and had a bone marrow transplant the next year. As far as Megan is aware, her daughter is the only living patient in New Zealand with this rare disorder.
Support group details: