Day appointed Oklahoma ambassador for NORD
MUSKOGEE – Cherokee Nation citizen Jade Day was recently appointed by the National Organization for Rare Disorders and the Oklahoma Rare Action Network as an ambassador for Oklahoma to serve as liaison between NORD and state agencies, networks and officials to increase awareness of rare diseases and disorders.
“I will be responsible for establishing and building a strong grassroots network of rare disease advocates within our state to help increase awareness of rare diseases and the challenges patients and their families face,” Day said.
Day’s work stems from her personal life of having a son diagnosed with a rare disorder called FG1 Syndrome. She said it took her family 7-1/2 years to get an official diagnosis after numerous tests were done.
“My experiences, as my son has grown, have shown me there was a lack of advocacy and support for families like mine. So, I educated myself and got training to help other families like mine,” she said.
According to rarediseases.org, NORD and its more than 280 patient organization members are committed the “identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.”
Day said she also wants to bring awareness of rare diseases and disorders in the Native American community. “I hope to bring in Native American rare disease health issues also because Natives are rarely represented in rare disease and genetics at all.”
She said there are approximately 7,000 rare disorders and diseases that NORD recognizes. The most common ones that people may have heard of are sickle cell anemia, cystic fibrosis, hemophilia A and B and all pediatric cancers.
NORD began out of necessity when in the 1970s and 1980s patients and their families had little to no access of treatments or information for rare diseases and disorders.
According to the National Institutes of Health, a disease is defined as rare if it affects fewer than 200,000 people in the United States and is genetic or has a genetic component.
In addition to her appointment, Day has organized Rare Disease Day at the state capital for the past two years and is a 2017 Oklahoma Partners in Policymaking graduate.
“It feels empowering. I feel like I can make changes in Oklahoma to better the lives of all Oklahomans, not just families living with rare disorders. I am thankful for this opportunity to improve the lives of rare disease patients and families and spread awareness to their needs. I also love the opportunity to open up the dialogue of Native Americans and rare disease. I feel the Native aspect of genetic disease has been neglected and needs further research,” she said.
For more information, email firstname.lastname@example.org
or visit rarediseases.org