SoteriaCare

SoteriaCare seeks to help patients and families navigate the various stages of rare disease diagnosis. From the initial shock to acceptance to the phases of treatment, this web-based platform will provide access to all information about the disease they seek to understand. It will also connect people in similar situations and align them with expert physicians to engage and begin treatment quickly. Rare disease knows no boundaries. This resource can make a big difference for patients and families globally.

Physicians and patients have emphasized the need for accurate, streamlined, and accessible information when seeking relevant data on rare disease diagnoses. Yearly, 4% of the global population is affected by a rare disease. After extensive research and multiple case studies; Physicians and patients alike are in desperate need of the convenience of information, community involvement, ease in finding the most qualified physicians, and SoteriaCare is the platform to unify them all.  

SoteriaCare’s website platform connects patients to physicians and vice versa, providing resources for those patients, and connects families going through similar experiences. The website features accurate disease information, physician recommendations based upon location, online positive community forums, patient and family spotlights, direct engagement with medical providers, and ease in appointment coordination. 

SoteriaCare was developed from personal life events by one of our team members whose son was born with a rare congenital spinal and brain abnormality. Their families' experience taught that those suffering from a pediatric rare disease have minimal resources during the various stages from diagnosis to treatment and maneuvering physician experience and expertise in rare diseases. The lack of resources creates emotional distress for those patients and families navigating a challenging time. 

In the US, 30 million people live with a rare disease; more than half of those are children. Globally around 4% of the population (320 million) is affected by a rare disease. Currently, the digital resources for patients to seek information lack the convenience of integrating accurate disease information, community connections, and physician interactions all in one place. Often it can take months for patients to find the right physician and even longer to be seen, which multiplies the emotional burden. 

Through professional experience and social media engagement, we have discovered that the need for connection is imperative, and a sense of community is limited. We have held various focus groups with physicians, patients, and parents of patients who have been diagnosed with a rare disease. The takeaways from those focus groups have informed us that not only does the patient have a difficult time finding the right resources, but the physicians are also restricted with educational materials and outlets to provide their patient before and after diagnosis. 

SoteriaCare can be a unified resource for patient quality care and provide a unique platform to connect patients with the community and physicians within the pediatric rare disease space and make a global impact. No one should walk their medical journey alone. 

For far too long, patients have been diagnosed and left searching for more information surrounding their rare condition, only to be left further dismayed or at worst more fearful than when they began. For the first time, there will be a safe, certified, and professional platform for patients to access expert knowledge, experience a supportive, positive community, and for physicians to provide education to connect with future patients.

SoteriaCare is currently in the prototyping stage as we have explored UX/UI user flow, determined early designs, and functional requirement discussions with a leading technology company based out of St. Louis, MO. We have held various focus groups that include all our target audience: patients, physicians, payers, and pharmaceutical companies. Data analysis from these focus groups has confirmed that our vision is needed. 

SoteriaCare provides an innovative solution to assist patients and families in maneuvering their medical journey with a pediatric rare disease by offering an advanced platform established for connection within the community/disease they are experiencing. Currently, there are very few attainable resources for these patients, and by helping coordinate better quality care, the patient will experience less stress due to the website's ease of use and connections with the best physicians in that specialty.

Through advanced technological integrations, including AI, SoteriaCare's platform will change healthcare quality for these patients and positively impact the relationships needed for treatment. Due to this unmet need, we expect that SoteriaCare will be influential and catalytic in the rare disease space. 

The core technology powering SoteriaCare’s website is an already existing .NET technology incorporating Microsoft SQL stack hosted on Azure cloud platform. We have chosen to use Microsoft as the company has established itself in the healthcare industry and seeks to develop new ways to include broad AI technology, which SoteriaCare plans to implement in phases. Functionally, SoteriaCare’s web platform features accurate data driven rare disease information, 3D human body imagery, natural language processing communication bot using conversational AI to help connect patients with physicians, and robust easy to use appointment scheduling. 

Recently, Microsoft has developed steps to acquire and develop new cloud-based strategies specific to healthcare, including their recent release of Microsoft Cloud for Healthcare and their purchase of Nuance, a pioneer and a leading provider of conversational AI and cloud-based ambient clinical intelligence for healthcare providers. We recognize, along with Microsoft, the importance of HIPAA compliance and aligning with healthcare industry standards as technology advances. 

Our technology solution utilizes a widely used and accepted technology, however, major advances in the healthcare industry have been introduced recently that complement what SoteriaCare plans to implement. Using Microsoft’s robust platform, we feel secure in knowing that they are always seeking to advance in the tech space. Examples of this include the CDC, Humana, and Walgreens to name a few.

As with all growing technology infrastructures, defending privacy and security vulnerabilities are of high importance. We have carefully vetted many options and have concluded that Microsoft Azure’s security platform will protect SoteriaCare from rapidly evolving threats and allow for multi-layered defense strategies in detecting those threats. Microsoft has decades of security experience and developed large scale intelligence with AI security systems that will keep us up to date as we grow.

Current number: Unavailable because the site is still in the prototype phase. 

One year: 1 out of 2 children are diagnosed with a rare disease. Three hundred million people globally are living with a rare disease, 25-30 million Americans. It has been hard to determine how many diagnoses are diagnosed annually because many are not tracked. Pediatric patients are the highest number affected because many rare diseases are genetic and congenital. 80% of those pediatric patients diagnosed are due to genetic factors. 

We believe it is realistic to have a presence in 5-10 percent of the newly diagnosed patients globally after year one. 

Five years: 30 percent of all newly diagnosed pediatric rare disease patients will depend on SoteriaCare to connect them and assist them to find the best care.

Impact goals:

1. Improve the mental health burden (anxiety/depression) that comes with a pediatric rare diagnosis.  SoteriaCare will connect with patients on a personal level and hold their hand through their journey. The platform will help and support where they need it. No one should walk their medical journey alone.
2. Give physicians a place to confidently guide their patients for resources, support, and second opinion consults live or virtually. SoteriaCare is starting in the pediatric neurosurgery space as most pediatric rare diseases are diagnosed at a young age within this specialty. We have already had focus groups with many of these physicians from prominent academic institutions.
3. Connect families with other families to share their stories and support each other.

We saw an immediate need and impact from this with our teammate doing a test trial of hashtagging her son’s disease state after sharing personal information about his health journey. Kristin has connected with people all over the globe seeking her support and knowledge based on her experience with her son.

1. Support physicians treating pediatric rare diseases by featuring their bio and research. In return, they will hold spots for SoteriaCare patients to get them seen and evaluated quickly after diagnosis.

We will measure our progress toward our initial key impact goals through strategic planning that aligns with our core mission. We will take a data driven approach to patient acquisition and & physician growth, while targeting strategic partners that align with SoteriaCare’s core values.  We will measure the conversion rate of patient acquisition, type of patient care (consultation to surgery) and take a data driven plan toward acquiring new pharma and payer clientele.

Currently, we have five members of the SoteriaCare team.

Our three principal female founders all bring unique professional and personal experiences to the team. We each represent one of the main branches that make up SoteriaCare’s target audience. 

The initial idea began with Kristin Lashoff, whose son, Kayden, was born with a rare spinal and brain abnormality. Kristin represents the Patient and is passionate about the need for a platform like SoteriaCare. Professionally, Kristin is in marketing and has a technology background that will aid in our business development efforts. 

As a pediatric neurosurgeon at Washington University, Dr. Jennifer Strahle represents the Physician. Dr. Strahle sees rare disease patients daily and heads up her own Strahle Research Lab to learn more about specific neurosurgical diseases. Dr. Strahle was Kayden’s neurosurgeon, which is now a personal connection for them both. 

Katie Zilm is a Specialty Account Manager for Horizon Therapeutics representing a rare Thyroid Eye Disease drug. Katie has extensive knowledge in the pharmaceutical/biotech industry, which is why she represents the healthcare industry. Personally, Katie has supported a few close family members who have suffered from rare diseases.

SoteriaCare is an entirely women-owned business and recognizes that rare pediatric diseases are not exclusive to certain races, genders, ethnicities, cultures, or specialty groups. Our mission is to represent everyone suffering from a rare disease, including everyone who works behind the scenes. As we begin to establish our company foundation, diversity will be critical in our hiring process. Starting with gathering essential information about employees as they are onboarded to begin to measure diversity data as we expand. Continuing with routine employee surveys, we will learn what areas are excelling and lacking in our company culture. Our business is founded on the goal of assisting those in unique and rare situations, which will translate to our DE&I implemented initiatives.

One of SoteriaCare's founding members has a son who was born with a few rare diseases called tethered cord syndrome, dermal sinus tract, and chiari malformation. The idea behind SoteriaCare stemmed from this personal experience. Every founding member has had experience with dealing with rare disease both personally and professionally. 

We are applying for The Horizon Prize to seek support and funding for the development and implementation of our advanced technology platform, so we can begin our journey to help improve quality care and connections for families and pediatric patients with rare diseases. 

We are in the early stages of developing and building the foundation of our company, so we ideally need assistance in all areas of business development. We all bring different expertise to the table, but outside sources could help us grow faster and more efficiently with a larger team. 

We want to partner with NORD (National Organization of Rare Diseases) as they have established themselves in the rare disease space. They can help us gather accurate disease information and connect us with the right companies or individuals to grow our platform. 

Professor Andrew Lo from MIT has made significant strides in advocating for financial help from the government to help channel more resources in funding basic research and clinical development for rare disease treatments. As a principal investigator at MIT's Computer Science and Artificial Intelligence Laboratory, we feel our idea aligns with Professor Lo's initiatives, and in tandem, the partnership can progress SoteriaCare's fundamental goals. 

Lastly, we want to partner with Horizon Therapeutics CEO Tim Walbert. Mr. Walbert has represented the rare disease industry professionally and personally as he is a rare disease patient himself. His advocacy for patient quality care and community connection also aligns with our core values.