Demand Innovation to Support Patients with Rare Diseases and COVID-19!

Demand Innovation to Support Patients with Rare Diseases and COVID-19!

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The Problem in Healthcare

Sadly, modern healthcare does not accommodate the individual with a rare disease.  It is not customized to meet the needs of patients with rare or little known diseases as evidenced in this pandemic with COVID-19. Diseases are not a "one size fits all" approach.  Innovation should reflect the needs of the individual and the demands of their health team. Our current healthcare system remains fragmented; patients and health teams lack the tools needed to provide safe and efficient patient care for patients with rare diseases. Primary care and specialists are critical decision makers and require support to coordinate with all members of the health team across all settings. Streamlined care coordination ensures the most appropriate next steps are available and implemented using a customized patient centered approach. Successful care coordination prevents complications, decreases provider stress, and results in excellent patient outcomes!

My Background

My name is Beth Nguyen and I am a nurse with a rare disease rarely recognized in medicine. My rare disease, Primary Syringomyelia was first identified in 1803.  Sadly, today in the year 2020, despite all the progress and advancements in medicine, numerous barriers remain for patients with rare diseases. Clinical resources to help patients and their providers in care settings are hard to find! I will get right to the point; today's healthcare system fails to accommodate the individual with a rare disease and struggles to meet needs of patients and health teams as evidenced by the continued decline in care coordination and care delivery for adults and children with rare diseases. 

Delayed Diagnosis and Care

In my own journey I spent five long years from onset of symptoms to diagnosis.  I went through multiple clinical visits,repeat testing, and financial waste searching for answers. By the time I was diagnosed at year five, I had already developed irreversible life threatening complications!  Worse still, I learned that with early intervention most of my complications could have been prevented. I had more than fifteen years of critical care experience and none of that helped me when a rare disease came along and changed my life. 

I had to start from scratch, advocate for myself and others, and create educational tools using evidenced based resources with the help of other beautiful leaders along my life's journey. It's hard advocating, and building resources while fighting your own serious health battle every day with grace and dignity.  Instead of giving up, determination brought forth opportunities to help empower others. I proudly wear many hats volunteering to help where needed in the rare sector. I have always loved my calling as a nurse and I became a Founder of Rare STRIDES® to help address unmet needs of rare patients; to empower patients and health teams in every aspect of healthcare with a focus on rare diseases. I want to give back to build a path for my beloved rare community in all healthcare settings.

The Solution

Rare STRIDES® was first conceived in 2015 and was formally established into a company in 2016.  Rare STRIDES® team started building technology to meet the complex needs of individuals affected by rare and common diseases. Real life experience helped drive this company forward.  At Rare STRIDES® we listen.  Many of us have actually walked the rare journey so we understand the disparities, and we truly care.

Rare STRIDES® mission is to empower patients and health teams with innovative tools to successfully navigate rare diseases; and to connect streamlined healthcare to the rare community one step at a time.  We also focus on giving back in a ground-breaking capacity to create programs for those with rare as well because we are fierce patient advocates and allies to all members of the health team! 

Rare STRIDES® is privately owned and operated so that we can work with everyone to create powerful programs for patients who deserve excellence in healthcare.

Rare STRIDES® purpose is to connect care to those with rare.  We are passionate about making healthcare accessible and affordable for everyone.  One of our goals is to empower patients and health teams with access to vetted resources and tools to deliver multidisciplinary clinical care to those with rare diseases in real time from any location. 

Innovative Technology

Rare STRIDES® offers two main communicating technologies: a mobile application with a suite of features and tracking functions to help patients securely share information with their provider, and a clinical portal specific to rare diseases for health teams. 

Rare STRIDES® Predictive Modeling and Rare Model of Care© technology provide portable access to patient centered care coordination, rapid next step diagnostic services, analytics, cutting edge AI tools, education, training, and vetted resources using a customized holistic team approach.

Combined, Rare STRIDES® tools provide a powerful system used by patients and health teams to streamline and deliver ongoing care. 


Initial studies of Rare STRIDES® tools show that by plugging in open source rare case studies against Rare STRIDES® proprietary processes:

  • Diagnostic Odysseys Shortened on Average from Five Years to weeks; repeat cases were shortened to the first diagnostic test!
  • Billions of Dollars in Annual Savings Demonstrated
  • Multiple Complications Prevented with Earlier Initiation of Care
  • Medical Necessity Justified Eliminating Hours of Wasted Time

Peace Of Mind is Priceless  

If you are affected by a rare disease rarely recognized in medicine, a provider or member of the health team interested in rare, a nonprofit medical board member working hard to develop tools for your rare disease, or you are simply interested in innovation to fight COVID-19 and you want to support this innovation please share this petition! We were asked how many individuals, families, academia, industry, and other groups really want technology like this to help advance rare diseases to the forefront of healthcare. We would like to find out how many are in support of this effort!!

We are launching this petition to raise awareness about the need for advancement of innovation for rare diseases and COVID-19 in direct care settings. We want to understand how many support customized healthcare for rare diseases and COVID-19. Do you support a company with the ability to give back to build more accessible programs for the rare community. Sign this petition to show solidarity and let everyone know how much this innovation is needed in healthcare ASAP! 

Contact Rare STRIDES® Today!


Rare STRIDES® is offering to adapt our technology to help fight the COVID-19 pandemic because we want to protect patients and health teams!  We believe our innovative technology can help with tracking, tracing, and testing now.  In order to accomplish this we need your help to spread the word! 

Please share this petition to increase awareness and show solidarity for progress in healthcare today!


98% of physicians in the US stated more office visits are required to diagnose a rare disease patient. (Shire)

92% of surveyed physicians report it takes additional office visits to adequately address symptoms of a rare disease patient than a typical patient.

Children with medical complexities utilize a significant amount of care coordination resources (fifty percent, $1.6 Billion) due to extensive medical needs. (Berry et al., 2014)​

The cost savings of efficient care coordination was estimated to have an impact of  $6 billion to $26 billion over ten years, with the potential of even more savings in the future. (Book and Holtz- Eakin, 2016)​

The cost of home healthcare reduces the medical cost by $6,500 per patient per year and decreased rate of readmission and death. (Romley et al., 2017)​

 In the Rare population, the number of hospital admissions is likely significantly higher. Eg, In PKU alone, the range in a number of admissions among 594 patients was 13 – 88 (55% ER Visits  43% Admissions Average stay 5 days) (Darba j. et al., 2019)​




0 have signed. Let’s get to 200!
At 200 signatures, this petition is more likely to be featured in recommendations!