RareTech

RareGen 

RareTech addresses the critical issue of inadequate access to comprehensive rare disease data and support networks for patients worldwide. By expanding our information network to include over 2,000 new rare diseases and scaling our patient data registrar to multiple countries, we aim to solve several interconnected problems:

1. Limited Data on Rare Diseases: There is a significant lack of robust, comprehensive data on rare diseases, which hinders research, treatment development, and patient care. By creating a global map of rare disease treatment and quality-of-life outcomes, we provide valuable insights for targeted global treatment development and research and development (R&D).

2. Fragmented Advocacy and Support: Rare disease patients often lack access to cohesive support networks and advocacy groups. By building strategic international partnerships with organizations like EURORDIS and the WHO, and leveraging our sister organization RareGen's grassroots advocacy ecosystem, we create a unified platform for patient support and advocacy.

3. Geographical and Language Barriers: Many rare disease patients, especially in developing countries, face barriers to accessing information and support due to language and geographical limitations. By localizing our web-app through translations and partnering with local rare disease access groups, we ensure that patients in Brazil, South Korea, Japan, Germany, and India can access crucial resources and support.

4. Patient Privacy and Data Protection: Ensuring the privacy and protection of patient data is paramount. Our platform is equipped with protected data registration technologies that comply with patient privacy regulations, providing a secure environment for patients to share their medical, emotional, and financial information.

5. Sustainable Patient Engagement: Rare disease patients need a sustainable platform that allows for continuous engagement and feedback. By democratizing access to rare disease data and creating a multi-generational patient involvement ecosystem, we alleviate the emotional, financial, and informational burdens patients face today.

Through these efforts, RareTech is solving the problem of fragmented and inaccessible rare disease data and support, ultimately aiming to improve the quality of life for rare disease patients globally.

RareTech provides a comprehensive solution for addressing the challenges faced by rare disease patients through an innovative platform that integrates several advanced technologies and strategic partnerships. Our solution is designed to democratize access to rare disease data, support networks, and personalized treatment recommendations while ensuring the security and privacy of patient data.

Core Components of Our Solution:

1. Global Information Network Expansion:

2. We are incorporating over 2,000 new rare diseases into our information network by building strategic international partnerships with organizations such as EURORDIS and the WHO.
   
   • Our platform leverages existing disease outcomes data from multiple advocacy groups to create a comprehensive global map of rare disease treatment and quality-of-life outcomes.

3. Localized Patient Data Registrar:

   • Our patient data registrar is scaling to operate in Brazil, South Korea, Japan, Germany, and India. This is facilitated through information sessions conducted by the public education wing of RareGen and includes localized translations in our web-app.
   • We partner with local rare disease access groups and public health officials to ensure accessibility and engagement.

4. LLM and NLP-Based Recommender System:

   • We utilize a large language model (LLM) and natural language processing (NLP) to develop a sophisticated recommender system. This system guides patients in choosing the most appropriate treatments by analyzing their medical history, current condition, and preferences.
   • The recommender system provides personalized recommendations on treatment plans, including a comprehensive analysis of costs and side effects, improving patient decision-making and treatment outcomes.

5. Blockchain-Based Data Security:

   • To safeguard patient data during the data-sharing process, we have implemented a blockchain-based system. This ensures that patient data entered into the registrar is securely stored and shared, maintaining the highest standards of privacy and security.
   • Blockchain technology provides an immutable and transparent ledger that protects against data breaches and unauthorized access, giving patients confidence in the security of their information.

6. Integrated Support and Advocacy Network:

   • Through our sister organization RareGen, we have created an ecosystem for international rare disease advocacy at the grassroots level in over 82 countries, with over 2,483 registered members having 900+ unique diseases.
   • Our platform includes a rare disease patient-led support network, offering personalized introductions and direct conversations, fostering a trustful and engaged community.

Innovation and Impact:

• Technological Innovation: Our solution integrates cutting-edge technologies like LLM, NLP, and blockchain to provide personalized, secure, and effective support for rare disease patients.
• Global Reach and Localization: By expanding our network globally and localizing our platform, we ensure that patients in diverse regions can access and benefit from our resources.
• Patient-Centric Approach: Our patient-driven platform allows users to actively participate in their healthcare journey, creating a sustainable ecosystem that continuously evolves based on patient feedback and needs.

By combining these innovative elements, RareTech offers a holistic solution that not only addresses the immediate needs of rare disease patients but also contributes to long-term improvements in rare disease research, treatment, and quality of life.

RareTech’s solution serves individuals affected by rare diseases, a population that is often overlooked and underserved in the global healthcare landscape. This includes patients, their families, caregivers, and healthcare providers, primarily across Brazil, South Korea, Japan, Germany, and India, with plans for further expansion.

Rare disease patients suffer from conditions that are often poorly understood, with limited treatment options and insufficient medical information. They frequently face long diagnostic odysseys, misdiagnoses, and a lack of tailored treatment plans. Families and caregivers of these patients often struggle with the emotional, financial, and logistical burdens of managing the disease, requiring reliable information and support to navigate the complexities of rare disease care. Additionally, healthcare providers treating rare disease patients need access to updated and comprehensive data to provide accurate diagnoses and effective treatments, but they often lack the resources and networks to collaborate on rare disease research and patient care.

Currently, rare disease patients and their caregivers frequently encounter a scarcity of reliable information about their conditions and potential treatments. Many patients also lack access to robust support networks that can provide emotional support, advocacy, and shared experiences. Concerns about privacy and security often make patients hesitant to share their medical data, further limiting the availability of crucial information. Moreover, patients in non-English-speaking and developing countries face additional challenges in accessing rare disease resources and support due to geographic and language barriers.

RareTech’s solution significantly impacts the lives of these individuals by addressing their critical needs. By expanding our information network to include over 2,000 new rare diseases and partnering with international organizations like EURORDIS and the WHO, we provide comprehensive and updated information on rare diseases, treatments, and quality-of-life outcomes. The LLM and NLP-based recommender system offers personalized treatment recommendations, helping patients make informed decisions about their care.

Through our collaboration with RareGen, we offer a patient-led support network that fosters community and advocacy, providing emotional support and practical guidance to patients and their families. Our blockchain-based data security system ensures that patient data is protected and securely shared, addressing privacy concerns and encouraging more patients to contribute their information to the registrar. By localizing our web-app with translations and partnering with local rare disease access groups, we make our platform accessible to patients in diverse regions, ensuring that language and geographical barriers do not impede access to vital resources.

The solution directly and meaningfully improves the quality of life for rare disease patients. They receive accurate diagnoses and personalized treatment plans more quickly, improving their overall health outcomes and quality of life. Access to reliable information and support networks empowers patients and caregivers to manage their conditions more effectively. Enhanced access to comprehensive rare disease data allows healthcare providers to deliver better care and engage in more effective research collaborations. By addressing these critical needs, RareTech creates a more informed, supported, and empowered community for rare disease patients and their support networks.

RareTech is firmly positioned in the growth stage of its development, having successfully established its core product and user base. The company's web and mobile app, equipped with protected data registration technologies, allows users to input medical, emotional, and financial information related to their rare disease journeys. This functional platform, already serving active users, signifies RareTech's progression beyond the initial startup phase.

A key driver of RareTech's growth is its strategic partnership with sister organization RareGen. This collaboration provides access to an extensive network of rare disease advocacy groups across 82 countries, encompassing over 2,483 registered members representing 900+ unique diseases. Such partnerships are characteristic of companies in the growth stage, enabling rapid expansion of reach and impact. Through RareGen's network, RareTech has established connections with a widespread and trustful potential-customer base, positioning the company for significant user acquisition and growth in the near future.

The company's growth is further fueled by its ongoing accumulation of valuable data. RareTech is actively building a rare disease databank, which serves as a crucial asset for biomedical companies engaged in R&D. As this database expands, it becomes increasingly valuable, attracting more partnerships and users. This data-driven approach aligns with RareTech's scalable model of democratizing access to rare disease information through multi-generational patient involvement.

RareTech's activities are centered around building impact through individual engagement and trust-building, typical of companies in the growth stage. This focus on user engagement and community building helps solidify the company's market position and expand its user base. The company's partners have validated its plan to increase awareness over the next year, indicating a structured approach to growth and market expansion.

In addition to data collection, RareTech has diversified its offerings to include personalized recommendations on treatment plans, complete with cost and side-effect analysis. This expansion of services enhances the company's value proposition and attracts more users, a common strategy for companies in the growth phase. As RareTech's user base grows, the value of its platform increases for all stakeholders - patients, healthcare providers, and biomedical companies - creating a positive feedback loop that can accelerate growth.

While focusing on current expansion, RareTech maintains a long-term vision of creating a diverse, comprehensive network of rare disease information. This balance between immediate growth and long-term goals is characteristic of companies in the growth stage. To capitalize on this phase, RareTech should continue expanding its user base through strategic partnerships, enhance its product offerings based on user feedback, and leverage its growing database to attract more biomedical research partners. Exploring additional revenue streams and international expansion opportunities will be crucial for sustaining RareTech's growth trajectory and realizing its mission of alleviating the emotional, financial, and informational burdens faced by rare disease patients.

RareTech's solution is innovative because it represents a paradigm shift in rare disease management, driven by the fresh perspectives and global mindset of our youth-led team. Our platform uniquely combines cutting-edge technology with a deep understanding of the diverse needs of the rare disease community worldwide.

At the core of our innovation is our AI-driven, blockchain-based platform that democratizes access to rare disease information and support. Unlike traditional healthcare models that often silo information, our solution creates a global ecosystem where patients, healthcare providers, and researchers can seamlessly interact and share knowledge.

Our digital health wallet is a groundbreaking feature that empowers patients to take control of their health journey. It serves as a secure, centralized repository for medical information, accessible anytime, anywhere. This is particularly crucial for rare disease patients who often struggle with fragmented care across multiple specialists.

The personalized treatment recommendations we offer through our premium service leverage advanced AI algorithms to analyze individual patient data against our vast database of rare disease information. This approach allows us to provide tailored insights that would be impossible to generate manually, potentially accelerating diagnosis and optimizing treatment plans.

Our platform's ability to connect patients with relevant clinical trials is another innovative aspect. By matching patient profiles with ongoing research, we're not only providing new treatment opportunities for individuals but also accelerating the pace of rare disease research globally.

The tiered access model we've implemented is an innovation in itself. By offering free basic services to all users while providing advanced features through a premium subscription, we've created a sustainable business model that ensures accessibility for all while generating the resources needed for continuous platform improvement.

We are applying to The Amgen Prize to overcome several key financial, legal, and market barriers that currently limit our ability to fully realize and scale RareTech’s impact. The support and resources provided by The Amgen Prize are essential in addressing these challenges and advancing our mission to improve the lives of rare disease patients worldwide.

Financial Barriers:

Securing funding is critical for the ongoing development and expansion of our platform. While we have already garnered initial financial support through awards and gratuities, substantial additional funding is needed to enhance our AI-driven platform, expand our localized operations, and support more rare disease patients globally. The financial support from The Amgen Prize would enable us to scale our operations, invest in advanced technologies, and extend our reach to underserved regions.

Legal Barriers:

Navigating the complex legal landscape of patient data privacy and international health regulations is a significant challenge. The Amgen Prize provides legal support and guidance, helping us ensure compliance with global privacy standards and regulations such as GDPR and HIPAA. This assistance would enable us to build a legally sound framework for data sharing and protection, fostering trust among patients and stakeholders.

Market Barriers:

Breaking into new markets and establishing partnerships with pharmaceutical companies, research institutions, and healthcare organizations is crucial for our growth. The Amgen Prize offers networking opportunities and visibility, connecting us with key stakeholders and potential partners. This exposure would help us forge strategic alliances, accelerate clinical trials, and enhance patient education and treatment adherence monitoring through our platform.

By addressing these barriers with the support of The Amgen Prize, we aim to significantly expand our impact, reaching more rare disease patients and improving their quality of life. The Prize’s comprehensive support package, including financial aid, technical mentorship, legal guidance, cultural competency training, and market access, is exactly what we need to overcome our current challenges and achieve our mission. We are confident that with The Amgen Prize’s backing, RareTech can become the leading global platform for rare disease information, support, and treatment.

Our team at RareTech is uniquely positioned to deliver this solution, drawing strength from our diverse backgrounds, personal experiences, and professional expertise in the rare disease space.

As a team primarily composed of people of color, we bring a range of perspectives that are often underrepresented in the healthcare and tech industries. This diversity allows us to approach problems with fresh insights and ensures that our solutions are inclusive and culturally sensitive. Additionally, three of our board members identify as transgender, further enhancing our ability to understand and address the unique challenges faced by LGBTQ+ individuals within the rare disease community.

What truly sets us apart is our intimate understanding of the rare disease journey. Four of our core board members have personally battled life-threatening rare diseases. These experiences have given us firsthand knowledge of the emotional, physical, and financial toll that rare diseases can take on patients and their families. We've navigated the complexities of the healthcare system, experienced the frustration of misdiagnoses, and felt the isolation that often comes with having a rare condition. This personal connection to our mission drives our passion and commitment to creating meaningful change.

Our team's expertise extends beyond personal experiences. Collectively, we have published over 30 peer-reviewed articles on rare diseases in leading medical journals. Our research has covered a wide range of topics, from genetic disorders to innovative treatment approaches, contributing significantly to the body of knowledge in the field.

We've also been active participants in the global rare disease community. Over the past five years, our team members have attended and presented at more than 20 international conferences focused on rare diseases. These events have allowed us to stay at the forefront of scientific advancements, network with key stakeholders, and share our vision for a more connected rare disease ecosystem.

Our advocacy efforts have taken us to global stages, including presentations at United Nations events where we've highlighted the urgent need for greater attention and resources for rare disease research and patient support. These experiences have honed our ability to communicate complex issues to diverse audiences and build coalitions for change.

Currently, we're working closely with the Rare Disease Institute to draft and promote legislation that would improve access to treatment and support for rare disease patients. This involvement in policy-making demonstrates our commitment to driving systemic change and our ability to navigate complex regulatory environments.

Our team's unique combination of personal experience, scientific expertise, and advocacy skills positions us perfectly to build and scale RareTech. We understand the needs of the rare disease community on a deeply personal level, have the technical knowledge to develop innovative solutions, and possess the network and communication skills to bring those solutions to a global audience.

By leveraging our diverse backgrounds, personal connections to rare diseases, and professional accomplishments, we are not just building a platform – we're creating a movement. Our goal is to transform the rare disease landscape, making it more inclusive, informed, and empowering for patients and their families worldwide.

• Grow our information network to be the world's largest by incorporating more than 2,000 new rare diseases by building strategic international partnerships to leverage existing disease outcomes data with multiple advocacy groups including EURORDIS, and the WHO at both the local and multi-national level.  
• Scaling our open-network patient data registrar to operate in Brazil, South Korea, Japan, Germany, and India by facilitating information sessions through the public education wing of RareGen, including localized translations in our web-app, and partnering with local rare disease access groups and public health officials. 
• Construct a global map of rare disease treatment and quality-of-life outcomes based on an anonymized analysis of patient data in compliance with patient privacy regulations to aid targeted global treatment development and R&D.

RareTech is well-positioned to scale our global information network to incorporate more diverse rare disease data, as our sister organization RareGen, has created an ecosystem for international rare disease advocacy at the grass roots level in over 82 countries, with over 2,483 registered members having 900+ unique diseases. Our involvement with multiple focused, grassroots advocacy groups has led us to make personalized introductions for RareTech amongst circles for many different diseases; this has led to a unique advantage in that we have accumulated a widespread and trustful potential-customer base, whom we have connected with at a personal level through direct conversation. Our partners have validated our plan of action to bring increased awareness for RareTech over the next year. RareTech hopes to continue on with our mission of creating a diverse, comprehensive network of rare disease information in the upcoming future.  

RareTech operates with the idea that democratizing access to rare disease data by creating an ecosystem for multi-generational patient involvement is pivotal in creating a sustainable platform to alleviating the emotional, financial, and informational burdens patients face today. These core components act as the guiding principles behind our long-term impact: 

Activities: RareTech's activities are centered around the idea that building impact can only happen with a space for individual engagement and trust building. Our activities include providing a web and mobile app that are equipped with protected data registration technologies, allowing users to enter medical, emotional, and financial information about their rare disease journey; personalized recommendations on treatment plans which includes a comprehensive analysis of the costs and side effects of a treatment; and a rare disease patient led support network through partnerships with our sister organization, RareGen, without any additional costs for membership. 

Immediate Outputs: The Immediate outputs of our activities are two-fold. Our first output is the creation of a rare disease databank which allows for new R&D from biomedical companies to provide more informed products and services. Our second output is increasing patient engagement in the rare disease product market which leads to a direct outlet for patients to have their concerns and needs reflected when it comes to products that are made to help them overcome their burdens. 

Long-Term Outputs: RareTech is focused on making a direct increase in the quality of life of rare disease patients across the globe. Our patient-driven platform allows for our users to create the change that they want to see, and access resources that allow them to further their involvement with the rare disease space. As companies continue to gain information from their customer base, they can make better products, and their customers in turn will have better incentives to provide feedback for future products as they see that progress is continuing to happen; this creates a cycle of sustainable growth into the future.

Existing Evidence of Impact: Patient-Driven platforms have been shown to create successes in aiding product development for rare disease patients. A 2014 study from the NIH shows that Rare Disease registrars have boosted scientific collaboration, patient satisfaction, and business success. We aim to extrapolate this past success at a larger, more holistic level, encompassing all rare diseases. 

18 (These team members include 3 Executives, 2 Blockchain Developers and 9 Machine Learning developers which comprises our full-time staff. We also have 4 part-time advisors)

1 year and 5 Months since the inception of our project, with the project's initial beta launch being in January  of 2024, and our LLC being registered within the past year. 

At RareTech, our commitment to diversity, equity, and inclusion (DEI) is the essence of who we are. As a youth-led organization, we embody the values of the most diverse and globally-minded generation in history. Our team, primarily composed of Gen Z and young Millennials, brings fresh perspectives and a natural inclination towards inclusivity to the complex world of rare diseases.

Our youth-driven approach is our superpower. We see the world not through the lens of borders or demographics, but as a global community united in the fight against rare diseases. This perspective allows us to create solutions that transcend traditional boundaries, connecting patients from bustling Indian cities to remote African villages, from European research centers to South American community clinics.

We believe that the future of rare disease management lies in the hands of the youth. Our team's diversity reflects the global nature of the rare disease community we serve. Our leadership includes young voices from various cultural backgrounds, many with personal connections to rare diseases. This diversity of experience and perspective drives our innovation and ensures our platform resonates with users across the globe.

Our platform serves as a digital United Nations of rare diseases, hosting a community that spans over 82 countries and encompasses more than 900 unique conditions. We celebrate this diversity, recognizing that each patient's experience, shaped by their cultural context and geographic location, contributes to a richer understanding of rare diseases.

As young innovators, we're not bound by traditional approaches. We leverage cutting-edge technology to break down barriers, offering our platform in multiple languages and collaborating with local patient groups to ensure cultural relevance. Our commitment to equity is reflected in our tiered pricing model, which includes subsidized access for patients in resource-limited settings.

We stand together as one global community, united by our youth and our shared mission. Our generation's inherent understanding of global interconnectedness allows us to create a truly inclusive environment where a young patient in rural India can connect with and learn from a peer in urban Brazil.

RareTech's business model is centered around providing access to comprehensive rare disease management and support services to patients, empowering them to navigate their health journey and improve their quality of life. Our solution offers a free digital platform for basic data entry, enabling users to securely store their medical information without cost. Advanced features, including personalized care recommendations and in-depth analysis, are available through our premium subscription service.

Our service offering includes a free digital health wallet, which acts as a secure, centralized repository for patients' medical information. For a monthly or annual fee, users can access our AI-driven personalized treatment recommendations, connect with clinical trials, and receive detailed health insights. This tiered approach ensures basic access for all while providing advanced support for those who choose to subscribe.

Our partnerships with healthcare providers, research institutions, and patient advocacy groups ensure a high level of trust and medical accuracy in our platform. This also helps to ensure that our services are reaching the people who require them the most, with some partners offering subsidized subscriptions to patients in need.

Our revenue model is multi-faceted. We generate income through premium subscriptions from patients who opt for our advanced services. Additionally, pharmaceutical companies, research institutions, and healthcare providers support RareTech's solution, recognizing the value of our aggregated data and patient engagement capabilities.

The main barrier to effective rare disease management is often the lack of centralized, accessible information and support. RareTech's solution directly addresses this by offering free basic services to all users. Once patients input their data, they can choose to upgrade to our premium services to receive personalized recommendations and advanced support.

While RareTech charges for premium services, we maintain a commitment to accessibility. We offer a portion of our subscriptions at reduced rates for patients in financial need, and we continually reinvest in improving our free basic services. Our revenue from subscriptions and partnerships allows us to sustain and enhance our platform, ultimately benefiting the entire rare disease community.

As an organization has filed as a  501(c)(3), RareTech will not solicit payments from any of its rare disease patients or on-ground healthcare facilitators. We have already been able to earn over $75,000 in awards and an additional $25,000 in gratuity, used for development, processing, software, planning, and implementation. AI-driven platform development and maintenance is currently and will continue to be our largest expense, and we have been able to fund support for 5,000 users. 

RareTech is still in the process of securing additional non-dilutive investments, including donations and grants, which do not contradict our (501)c(3) status. 

RareTech plans to fund its operations through strategic partnerships with pharmaceutical companies, research institutions, and biotechnology firms focused on rare diseases. We are in advanced talks with Moderna, Pfizer, and the Indian Council of Medical Research (ICMR) to facilitate clinical trials, patient education, and treatment adherence monitoring through our platform. As these partners benefit from improved patient engagement and data collection, they will donate to RareTech a percentage of their research and development cost savings.

We have established key research partnerships with prestigious institutions such as Harvard Medical School and the Broad Institute at Harvard University and Massachusetts Institute of Technology. These collaborations allow us to integrate cutting-edge research into our platform, improving rare disease diagnosis and treatment protocols.

We have also initiated discussions with the Indian government, particularly the Ministry of Health and Family Welfare and the Andhra Pradesh state government, to integrate our platform into their rare disease management programs. This could lead to government contracts and funding support for expanding our services to underserved populations.

Furthermore, as a participant in the United Nations' Digital Health Initiative, RareTech has access to a global network of healthcare experts and potential funding opportunities. We are leveraging this network to explore partnerships with international rare disease organizations and potential expansion to other developing countries.

RareTech is also developing a premium service tier for healthcare providers and researchers, offering advanced analytics and customized reporting tools. While our core services for patients remain free, this B2B offering will be a tool to incentivize healthcare providers to donate, as they will receive access to this service. 

RareTech has been successfully implemented in several regions across India, with a particular focus on Andhra Pradesh. Our platform is currently being used by over 5,000 rare disease patients.

Real-world case studies further demonstrate RareTech's impact. In a rural village in Andhra Pradesh, a 7-year-old girl with a previously undiagnosed case of Aarskog syndrome received a correct diagnosis within 4 days of her family using RareTech. L.V. Prasad Eye Institutes Affiliate in Hyderabad reported a 50% reduction in emergency room visits among their rare disease patients after implementing RareTech's predictive analytics and early warning system.