Connecting Care to Those with Rare

February Blog

A Compassionate Nurse’s Vision Leads to Innovation in Healthcare for Rare Diseases

Identifying the Need

Men, women, and children living with rare diseases often face uncertainty and hardship when navigating the healthcare system. Care coordination, next step diagnostics, vetted resources, and relevant clinical tools are critical needs for patients and health teams to provide equal access to healthcare services for patients affected by rare diseases. We are committed to help meet those needs 365 days per year.

Streamlined care coordination and successful management of a disease process has been shown to reduce patient and provider stress, prevent complications, reduce cost, and improve quality of life.

Rare STRIDES® Mission

Rare STRIDES® mission is to empower patients and health teams; and to connect healthcare to the rare community one step at a time. Rare Strides® groundbreaking technology combines proven clinical methods into new innovation to open endless possibilities in healthcare for patients with rare diseases.

The Backstory

My name is Beth Nguyen and I am a compassionate registered nurse and fierce patient advocate with a vision. My rare health journey began in 2012 with unexplained symptoms that disrupted my quality of life. From the start of symptoms to diagnosis, it took five long years of repeat testing, multiple provider visits, high costs, unanswered questions, limited resources, and stress. By the time I received a rare diagnosis out-of-state, I had already developed serious complications including heart failure. I knew then that something needed to change and Rare STRIDES® was established out of necessity to help save lives.

It is important to understand that critical care training and fifteen years bedside nursing experience did not help me in my personal rare journey. Healthcare was fragmented in the best of times and there were few resources available to medical teams who cared for me. The fragmented system resulted in missed diagnoses, duplicate testing, battles with insurance companies to cover testing, and further deterioration of my personal health. Clinical tools relevant to my rare disease simply did not exist making each visit an uphill battle against impossible odds with no end in sight.

My personal experience of hardship became the driving force behind spearheading multiple initiatives to help others with rare. I am a Founder of Rare STRIDES® to make a positive difference! I want to ensure those with rare diseases and medical teams caring for patients affected by rare have equal access to relevant resources and clinical tools to prevent suffering, restore hope, and improve quality of life.

Why Rare STRIDES®?

Rare STRIDES® technology was established to serve as a beacon of hope and independent voice in healthcare for individuals with rare diseases. Our tagline: “Connecting Care to Those with Rare” is essentially the heart of what we do every single day. Our logo holds special meaning: “It’s the Dawn of a New Day for the Rare Landscape.” We also focus on giving back, to “push the envelope”, and establish powerful programs for children and adults with rare diseases who deserve excellence in all healthcare settings.

Rare STRIDES® leadership have lived with rare or their families have been personally touched by rare. The experiences strengthened their understanding about the disparities often faced by the rare community and strengthened their resolve to create a strong foundation for the future. We are passionate about making health strides for rare our priority.

2020 Call to Action

It’s time to Connect Healthcare to Rare! Make #HealthSTRIDES4Rare a priority in 2020! Share four ways healthcare can transform to meet the needs of your rare community and use the hashtags #HealthSTRIDES4Rare and #myrarestride. Five posts will be selected to participate in an exciting film opportunity; final selections complete by March 20!

At Rare STRIDES®, our compassionate team is committed to serve the rare disease community and we proudly support the mission of Rare Disease Day! Rare Disease Day is celebrated worldwide on the 29th of February each year and this year we are sharing a powerful message on social media to honor those with rare.

Empower your Health STRIDES with us! If you would like to partner or learn more about Rare STRIDES®