Running for rare disorders
11 Jul 2018
A science student is running her first marathon to raise money for NZORD and the rare disorder community in New Zealand.
Brittany Vining is in her final year of a Bachelor of Science, majoring in genetics, with a double major in psychology and sports science. She plans to go on and complete a Masters in Genetic Counselling when she has finished her undergraduate studies at Massey University.
Through her studies, Brittany found out about how our health system’s collectivist approach disadvantages patients with rare disorders – she was shocked to learn about the lack of support and wanted to help.
“Every day, families are affected by health conditions and the diagnosis of genetic disorders they would have never anticipated. Many of these disorders are so rare, no one else in New Zealand may be diagnosed and it can be so difficult to find support from people that have experienced these or have knowledge of these disorders,” says Brittany.
Brittany had also heard the news reports of NZORD’s funding cuts and wanted to support the only organisation that represents the more than 377,000 rare disorder patients in New Zealand.
“Once I read about the reduction in PHARMAC funding, the snub from the government's initial election promise, and started researching the role of genetic counselors in New Zealand, I came to the conclusion that I wanted to do all I can to raise awareness for those with rare disorders and raise money to help those that really need it,” says Brittany.
Brittany is running her first marathon on 1 September in Kinloch, near Taupo. She wants to help all rare disorders patients so chose to support NZORD.
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