Connecting Care to Those with Rare

December Blog

Rare Belongs in Healthcare

Identifying the Need

Care coordination, rapid diagnostics, continuity of care, and relevant clinical tools for patients currently living with rare diseases is critical to identifying individuals at risk for rare, supporting ongoing next steps in the diagnostic process, and ensuring equal access to healthcare. Successful management of a disease process can reduce patient and provider stress, prevent complications, and improve overall quality of life. Rare Strides® empowers patients and their loved ones to become active participants with their healthcare team. Predictive Modeling in the field of rare diseases can increase provider confidence in decision making, support next steps in ongoing patient care, and ensure rapid access to trusted resources for patients with rare diseases and their providers across all disciplines. Justification of medical necessity can decrease cost and eliminate hours of paperwork allowing providers to get back to what is important…the patient.

Rare STRIDES® Mission

Rare STRIDES® mission is to Connect Care to Those with Rare. Rare Strides® technology and the compassionate leadership team empowers individuals living with rare, their communities, and their healthcare teams. Rare STRIDES® was created by Beth Nguyen RN, Dr. Erik Fisher PhD, and Gary Kirkpatrick; leaders driven by compassion for rare. Beth has a long standing history serving the rare community and spent years listening to the problems expressed by medical teams, families, nonprofits, and individuals striving to find a voice in healthcare.

The Backstory

My name is Beth Nguyen and I am a registered nurse, rare patient, compassionate rare advocate, and founder of Rare STRIDES®. My own health journey began in 2012 with unexplained symptoms that impacted my quality of life. From the start of symptoms to diagnosis, it took five long years of repeated testing, multiple provider visits, high costs, and stress. By the time I was diagnosed out-of-state, I had already developed serious complications including heart failure. Healthcare remained fragmented and there were few resources available to medical teams who cared for me. Explaining my rare disease and teaching each new provider became the norm and access to vetted information about how to manage my rare disease did not exist. My own personal experience inspired me to make sure others would not have to go through the same hardship ever again.

Why Rare STRIDES®?

Rare STRIDES® was founded in 2016 to empower patients and healthcare providers in the field of rare diseases. Our mission is simple: Connect Care to Those with Rare. Patients with rare diseases and unmet needs deserve a strong voice in direct medical care that is privately owned and operated by leaders in rare. Rare STRIDES® is currently in development and we offer two applications. A mobile application for patients and their loved ones, and a clinical application for healthcare teams. The systems are designed to communicate seamlessly. Rare STRIDES® focuses on next steps and incorporates a multi-system holistic approach to care.

December Call to Action

Empower your Health STRIDES with us! If you would like to partner or learn more about how to get involved to grow with us.

It’s time to connect healthcare to rare. We look forward to a conversation with you!