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Mar. 15, 2017

TOPIC: Advocacy, Medical, Patient Stories

Beth Nguyen, R.N. – 2017 Rare Impact Award Honoree

Posted by Amanda DeBellis

2017 Honoree
Rare Impact Awards

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Beth Nguyen, R.N.

Mother, wife, nurse, patient, advocate, and leader; Beth Nguyen wears multiple hats, and not one loosely.

In 2007, before she began to experience health problems, Beth had a job she loved as an emergency room nurse and was highly-regarded by her colleagues, married to her high school sweetheart, and the mother of two young children.

Then followed a 5-year battle with her health during which Beth could no longer work and doctors dismissed or incorrectly diagnosed her symptoms.  In 2012, Beth was finally given the diagnosis of Syringomyelia, a rare disease in which cysts form on the spinal cord and painfully destroy it from the inside out.  By then, she had unfortunately developed permanent damage.  She knew that she needed to do something to help others.

She has since established a 501(c)(3) organization, the Worldwide Syringomyelia and Chiari Malformation Task Force (WSCTF), to increase understanding of the disease across all medical disciplines and to improve direct patient care.  She also started a patient registry to drive research, has organized support groups, and developed of the first-ever advocacy models of care for both Syringomyelia and Chiari Malformation.

Beth also became one of NORD’s first Rare Action NetworkSM State Ambassadors. In this role, she works with NORD to organize grassroots advocacy efforts in Georgia and serves as a mentor for rare disease advocates across the state. She has helped to establish a Rare Disease Advisory Council within the state government and has organized successful Rare Disease Day® events.

Why is Beth taking on so much while continuing to battle a health crisis of her own?  In response, she cites a favorite quote from Florence Nightingale, which reads, “Rather, ten times, die in the surf, heralding the way to a new world, than stand idly on the shore.” Beth is passionate about using her experience as a way to prevent others’ suffering.

“I worked in the emergency room and had no idea about disparities in rare diseases until I started my own journey and it opened my eyes,” she says.  “I felt terrible, and there was this whole other world of individuals who fought on a daily basis to survive… I’m using my journey as a way to open doors for people who need help in the rare community. My heart is with the individuals who are suffering from this.”

NORD is honored to present Beth Nguyen with a 2017 Rare Impact Award.

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