Today we are pleased to introduce you to Michelle Oliva. Michelle does so much to advocate for her patient's care and provide support through their journey. She has a passion for rare diseases and limiting barriers for care. Read more about Michelle below and for additional information in regards to the Rare Disease Day click here or WashU's flyer!
Title-MSN, RN
How long have you worked in the rare disease community in St. Louis?
I realize that beginning of my rare disease experience started as a floor nurse at St. Louis Children's Hospital in St. Louis and then a Clinical Nurse Coordinator at Washington University, both in pediatric neurology 23 years ago, where a large proportion of the population who needed support and care had rare diagnosis’s. Since November of 2022, I have specialized in all things rare disease within the department of Genetics and Genomics at Washington University as their rare disorders Nurse Navigator.
How does your role impact the rare disease community?
As a nurse navigator in genetics, I find resources and advocate for patients. This varies from trying to find coverage for a medication, sharing patient advocacy group (PAG) information or scheduling as many appointments as possible on the same day for someone who lives hours away and needs regular specialized care.
I support our National Organization of Rare Disease (NORD) Center of Excellence (CoE) designation by participating in NORD meetings and a Diversity and Inclusion working group with an aim to incorporate NORD CoE initiatives, including reducing barriers to care. Attending ultra-rare clinics has allowed me to have a personal connection with patients and families. My goal is to continue to establish relationships at WashU, patient advocacy groups and through NORD that work closely with local, state, and national organizations focused on collaboration, education, and advocacy for Rare Disorders.
You have a Rare Disease Day Event coming up at Washington U, can you share with us more about that event and how people can become involved?
Rare Disease Day® is an international event held on the last day of February to raise awareness about the impact of rare diseases on patients’ lives and to emphasize the need for research. To mark this day, we are hosting our second annual Rare Disease Day Symposium at Washington University Medical Center and bring together those working on rare diseases to collaborate, share experiences, work through obstacles and discuss the future of rare diseases, and inspire young scientists and clinicians to choose a path in rare diseases. The event is hybrid and open to all including patients, families and advocacy groups. This year we a scheduled a meet and greet for patients and families impacted by rare disease. Attendance is free and the last day to sign up is on 2/15/2024 at noon. We want to continue to grow our Rare Disease Day event and will be requesting input on how to continue to make it successful, meaningful and impactful.
Any parting words?
It is an honor to work in this field. I have been able to see triumphs over trials and strength beyond words. I am grateful for the opportunity to share my passion and skills in this work.
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