36. Welcome Back + Meet an Expert: Beth Nguyen, Founder at Rare Strides & GA NORD Ambassador

The Rare Disorder Podcast

The episode we've all been waiting for, and it's finally here! In this episode, I'm so honored to chat with Beth Nguyen. Beth is the Managing Director; Founding Partner, and President of Rare STRIDES.

Beth is a seasoned registered nurse with a diverse background in critical care, transplant, and emergency room; Honored Atlanta AJC Nurse of the Year Nominee three years consecutively for excellence in bedside care; Serves as the volunteer Georgia Ambassador for the National Organization for Rare Disorders; Led efforts to establish the Georgia Rare Disease Advisory Council; Leader of Annual Rare Disease Day events in Georgia; Founder of Worldwide Syringomyelia & Chiari Task Force; a 501c3 nonprofit; Founder of Rare STRIDES; Developed the first Rare Multidisciplinary Rare Disease Model of Care, Authored numerous published articles and a book including “What is the Purpose of Collaboration and Continuity of Care”, “Beyond Syringomyelia”, and was the Recipient of the 2017 Rare Impact Awards in Washington, DC.

Beth’s humbling and often difficult personal experiences with rare as a patient, medical professional and rare leader empowered her to give back to those with unmet needs in the rare community. She is leveraging wisdom gained over the years through first-hand experience as a powerhouse of knowledge to help drive progress in all areas of care coordination and direct medical care in the field of rare diseases. She is fiercely devoted to empowering healthcare teams and patients with groundbreaking technology that will promote patient safety, prevent complications, advance care coordination, deliver vetted services, streamline models of care, and set a new standard for excellent medical care across all disciplines for men, women and children with rare diseases.

Favorite quote: “Rather, ten times, die in the surf, heralding the way to a new world, than stand idly on the shore.” Florence Nightingale

***note: in this episode, I mentioned that Rare STRIDES is a non-profit organization. Instead, it is an organization that is passionate about giving back to fund patient programs and continued innovation for children and adults with rare diseases who deserve excellence in healthcare.

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rarestrides.com

@rarestrides

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