RareConnections

1. The main problem we are committed to solving is finding better care for those affected with rare diseases on both a short- and long-term basis. 

2. The solution we are proposing involves an mHealth app, that actively seeks to provide interactions between patients, community members, and researchers. Along with the ability to communicate in groups, our app gives the opportunity for community members and patients to set up fundraisers for rare diseases of their choice. There will be a research database that shows all rare diseases and the needs of each by order of no. of publications and treatments. This database will encourage researchers to communicate needs for certain rare diseases community advocates could setup. 

3. Our solution has the potential to drastically improve management and care for rare diseases in under-sourced communities, and provide insight of the exact research needs around the world for this understudied subject.

The problem we are working on entails better care for those affected by rare disease (RD). Around the world, nearly 300 million people are affected by a form of RD. 

Even though it is called rare disease, the number of people afflicted is fare from rare. 

The factors of the problem that relate to my solution is the lack of communication between researchers and those affected by the disease. Most of the time, it is the lack of research that contributes to gaps in proper care. By providing a setup where many community members are sharing and working on the same projects 

Our solution is a mobile health application dedicated to increasing research for rare diseases in order improve diagnosis, management, treatment for these maladies. Our app accomplishes this by bringing together patients, community advocates, and researchers to inform and fundraise for different rare diseases, depending on need.

The target population this app aims to serve are the 350 million people around the globe with rare diseases. Currently, there are more than 6800 rare diseases. This cohort is very well underserved because of the lack of research and data available, there aren't many management options. Because of the insufficiencies, the mortality rate was significantly high (with 95% of all diseases incurable), leading to unnecessary deaths. 

In order to understand needs better, we contacted the Joey Foubdation, a nonprofit that raises funds for cystic fibrosis. We had the opportunity to personally talk with patients. One of the top responses for improving the quality of life for those with rare diseases was a way to connect all those with rare diseases. We took the advice and decided to create RareConnections as a platform where users can chat, join community groups, and raise funds for their diseases into research. 

The problem my app is targeting is improving the quality of life for those with RD. The Horizon Challenge addresses how technology can help people with rare diseases get the right care faster. On both a long and short term basis, our app is speeding up care. The research registry aspect of the app is solely dedicated to increasing research to find cures for RD quicker. The target population in my app is the same as the challenge: patients with rare diseases. My app directly serves the needs for patients through research, funds, and interactions. 

RareConnections was created under Khan Innovations, a startup focused on improving medical management via mHealth technology with machine learning algorithms. As of date, this organization is undergoing user testing, with demo rollouts tested by 30+ employees at Nielsen IQ - a marketing intelligence software provider. Since Nielsen IQ is the only community targeted for testing, the stage of development of RareConnections is at Pilot. 

What makes RareConnections innovative is that it is the first application where all those directly and indirectly affected by rare diseases can interact and work together to raise funds for research/improve quality of life for those affected.

According to the "Recommendations for Improving the Quality of Rare Disease Registries" research, rare disease (RD) registries are needed more than ever to diagnose, manage, and treat the diseases. 

Our app adds the registry component, but goes further to promote research through community fundraising and support on a global platform. I expect this solution to be catalytic as it is the first mHealth app to reach globally and provide users from under-sourced communities just as much information and possible help from other communities. 

The core technology that powers the solution would be API (Application Programming Interface) and machine learning (ML).

We will use API heavily in our application to sync data from research databases and then use machine learning algorithms to organize which research is most needed, depending on publications and time of publications. 

To elaborate, API is the acronym for Application Programming Interface, which is a software intermediary that allows two applications to talk to each other. In this case the API is the connection between our app and the research database, that syncs into the app through this connector.

A machine learning model is a file that has been trained to recognize certain types of patterns. You train a model over a set of data, providing it an algorithm that it can use to reason over and learn from those data.

1. API - API stands for application programming interface. APIs let your product or service communicate with other products and services without having to know how they're implemented. This can simplify app development, saving time and money.

Source: https://www.redhat.com/en/topi...

2. Machine Learning - Machine learning is used in internet search engines, email filters to sort out spam, websites to make personalized recommendations, banking software to detect unusual transactions, and lots of apps on our phones such as voice recognition. In this app, we will use machine learning to sort out the lack of research conducted for different rare diseases.

Source: https://royalsociety.org/topic...

APIs do not collect data of users in the app. While some machine learning models collect information of the user, it is merely used to detect different community group or fund suggestions, based on age, race/ethnicity, and disease.

Other than model use, private information will not be sent anywhere else. 

Currently, the solution serves users in United States (due to language barriers in staff and app). Because our product is still in its pilot stage, it does not serve anyone at this point. In one year, we plan to serve at least 1,000 patients. In the next five years, we plant to increase patients to 19,000 patients users. 

Our impact goals for next year is reaching out of the United States to Canada to promote the app. We hope to reach out of the country after publishing the app on the App Store and Play Store at the end of this year. 

In the process of publishing the app, we hope to recruit a team of software developers, designers, researchers, and begin hiring ambassadors to serve the goal users (1,000 by next year). We plan on achieving the employees by partnership with Nielsen IQ, a corporation we have already begun working with for the framework of the organization. Additionally, we plan on adding positions and posts all throughout LinkedIn and other job sites.

in the next five years, we hope to expand employees and leadership committees through similar methods used in year 1. We additionally anticipate to go internationally, targeting at least 7 countries culturally and linguistically compatible with the app. In order to accomplish this, we must:

• Localize company website or blog.

• Localize social media marketing strategy.

• Localize user acquisition strategy.

• Hire local marketing support.

• Hire local public relations support.

• Hire local customer service support.

• Hire local legal support.

  All with the help of employee and tool budget that increases with app revenue 

We are measuring our progress by setting a quantitative number for employee goals and budget. For qualitative factors, such as app quality, we will measure progress through customer satisfaction, app function/usability (via user testing), and by closely following the UN SDG as competencies align with rare diseases.

There are currently 2 full-time staff members for this solution team. 

The team members, Hibah and Sarah Khan, have dedicated nearly 3 years to app building and 2 to machine learning models. They are both currently high school students in Pennsylvania, but have had the experience to work in multiple CS and business oriented internships and courses. Despite this experience, both members receive mentoring for RareConnections with business analysts and engineers at Nielsen IQ, a marketing intelligence software provider.

Though Hibah and Sarah have not been personally affected by rare disease, they had the opportunity to get in touch with The Joey Fund, a foundation dedicated to raising funds for cystic fibrosis. They had the opportunity to meet with some families afflicted and discussed ideas not already present to accelerate rare disease management. Some ideas they mentioned they wanted was more accessible interaction between patients with rare diseases and providers. This input meaningfully guides Hibah and Sarah as there is a lack of attention given concerns of those inflicted and more so on stats. It was important to get input directly from the afflicted as it directly pertains to them. Through thorough research and inputs, RareConnections was founded.

The approach to build a diverse, equitable, and inclusive leadership is to first and foremost, set a required number of historically underrepresented groups in our ambassador team by the end of this year. 

Some of the values RareConnections values are the following:

People - work closely with Human Resources to ensure diverse, equitable and inclusive retention and recruiting. Retention efforts include promoting key areas: an inclusive culture and policies, career opportunities and professional development for all associates, mentorship and sponsorship. Recruiting efforts will include talent attraction, diverse candidate slates and manager anti-bias workshops.

Supplier Diversity - Our plan for partnerships is to work directly with organizations that value diversity. Any products/services we may receive will be provided by certified diverse-owned businesses.

No. Though none of the members are afflicted with a rare disease, reading stories and meeting with families whose child suffered and ultimately succumbed to cystic fibrosis makes this project an extremely important endeavor.

Before embarking on this project, our team reached out to families who were affected by rare diseases. Discussions on a personal level not only helped us gain an emotional drive to solving the problem but also opened many avenues to bring real change for rare diseases.

We are applying for The Horizon Prize because it is one of the only competitions that allows public input of a topic so unrecognized one does not see elsewhere. With the funds, we hope to solve management issues for rare diseases on a short and long-term basis.

As you can tell from the business plan, the API and ML cover the majority of the year's cost. While we may receive some financial help from Nielsen IQ for business management, we are much more reliant on grants and The Horizon Prize to buy the technology.

The Broad Institute of MIT and Harvard could help as serving as researchers or promoters for researchers, as they have a sector dedicated to research of rare disease.