CarePlugin
If you’re suffering from a rare disease or chronic illness or a caregiver for someone who is, you’re not alone. Connect with other patients and caregivers, learn about your condition, and share your story on CarePlugin. CarePlugin is a free mobile app that connects caregivers, parents, and patients with similar rare diseases or symptoms. Take back control of your health and future by finding the resources and the social health group you need to thrive. Connect with knowledgeable and motivated patients and caregivers like you. Track your symptoms, share your diagnosis, learn more about your disease and help others through their healing process. Get support from people who share your disease. Find and show support for chronic diseases, depression, symptoms and more with a network of patients and caregivers. Share as much or as little about yourself and your condition as you’d like. Whether you have a chronic illness, newly identified disease or a mental disease, what you share with whom is your decision. Don’t let your disease isolate you from the world. Connect and learn together with CarePlugin.
A disease is defined as rare in the United States when it affects fewer than 200,000 Americans at any given time. Currently, there are an estimated 25 to 30 million Americans, almost one in ten, living with one of the 7,000 identified rare diseases, disorders, and syndromes. Because so few people have a specific rare disease, the mainstream medical community often overlooks this population when researching treatments and educating medical students. As a result, the average time it takes for patients to receive a rare diagnosis is 4.8 years, and 95% of rare diseases lack an FDA approved treatment. People facing a rare disease diagnosis for themselves or a family member struggle to find doctors who have any knowledge of their disease. They rely heavily on others with shared diagnoses as they are often the experts, or gurus, of their rare disease. The current archaic avenues of connection mean it could take months (if ever) for people afflicted with the same rare disease to find one another.
When you have a rare diagnosis, there are only a handful of doctors in the country who may be familiar with your diagnosis. Patients must frequently travel hundreds, if not thousands, of miles from home for adequate care. Shockingly, most states do not allow out-of-state doctors to practice medicine via Telehealth appointments. Patients who have been unable to travel out of state to see specialists have gone months without treatment during the pandemic with no end in sight.
Connecting people with others in similar health circumstances, whether it is surrounding the premature birth of a child or a family member’s rare diagnosis, is extremely powerful. There are over 25 million people in the United States with one of 7,000 rare diagnoses. However, with so few people diagnosed with any given rare disease, they are underfunded and widely unknown by the medical community. As a result, the average time it takes for a patient with a rare disease to receive an accurate diagnosis is almost five years (it took our family 5 years.) Finding a knowledgeable medical team and treatment plan after a rare diagnosis often takes much longer.
The CarePlugin app is like a bullet train for the rare disease community, enabling them to fast forward through the typical roadblocks surrounding a rare diagnosis.
CarePlugin is a social media app that connects patients, caregivers, and many other patients and caregivers who are caring for or have the same disease as you. We believe it is really good when one is going through a difficult time and you don’t know what to do. It brings a lot of solutions and you can even meet people to become your lifelong friends.
The CarePlugin app helps patients, caregivers, parents, and teens make meaningful connections with others facing a similar health journey. Users across the globe are matched on over 7,000 diagnoses and 20,000 symptoms (provided by the US Genetic and Rare Diseases Information Center (GARD)) and are able to connect with their matches to give support and share health resources. The CarePlugin app allows patients and caregivers to enter their symptoms into their profiles so others with similar symptoms can connect.
The CarePlugin app helps caregivers, parents, and patients’ years 10 old and up with a rare (or non-rare) diagnosis make meaningful connections with others facing a similar health journey. CarePlugin users can connect easily with other users that have the same conditions, are experiencing the same symptoms, or using similar treatments. Users can create individual or group messages with connections to share personal stories and health data to support one another and obtain new knowledge on shared diagnoses. Furthermore, the journey for caregivers of those living with a rare disease is often a forgotten one. CarePlugin will allow millions of fellow caregivers, like myself, to connect, share, and support one another. Together we can become even greater advocates for our loved ones affected by a rare disease while helping each other heal in the process.
The rare disease community is inherently diverse, as it affects more than 30 million (about 1 in 10) Americans and 400 million people worldwide. Since the vast majority of rare diseases are genetic in origin, however, we tend to know more about the diversity of biological factors influencing disease populations – and what they share in common in terms of diagnostic and access challenges, lack of available treatments, etc., — than we do about how health equity, diversity and inclusion issues specifically and proportionally relate to rare disease communities.
A disease is defined as rare in the United States when it affects fewer than 200,000 Americans at any given time. Currently, there are an estimated 25 to 30 million Americans, almost one in ten, living with one of the 7,000 identified rare diseases, disorders, and syndromes. Because so few people have a specific rare disease, the mainstream medical community often overlooks this population when researching treatments and educating medical students. As a result, the average time it takes for patients to receive a rare diagnosis is 4.8 years, and 95% of rare diseases lack an FDA approved treatment. People facing a rare disease diagnosis for themselves or a family member struggle to find doctors who have any knowledge of their disease. They rely heavily on others with shared diagnoses as they are often the experts, or gurus, of their rare disease. The current archaic avenues of connection mean it could take months (if ever) for people afflicted with the same rare disease to find one another.
Connecting people with others in similar health circumstances, whether it is surrounding the premature birth of a child or a family member’s rare diagnosis, is extremely powerful. There are over 25 million people in the United States with one of 7,000 rare diagnoses. However, with so few people diagnosed with any given rare disease, they are underfunded and widely unknown by the medical community. As a result, the average time it takes for a patient with a rare disease to receive an accurate diagnosis is almost five years (it took our family 5 years.) Finding a knowledgeable medical team and treatment plan after a rare diagnosis often takes much longer. The CarePlugin app is like a bullet train for the rare disease community, enabling them to fast forward through the typical roadblocks surrounding a rare diagnosis.
The CarePlugin app helps patients, caregivers, parents, and teens make meaningful connections with others facing a similar health journey. Users across the globe are matched on over 7,000 diagnoses and 20,000 symptoms (provided by the US Genetic and Rare Diseases Information Center (GARD)) and are able to connect with their matches to give support and share health resources. The CarePlugin app allows patients and caregivers to enter their symptoms into their profiles so others with similar symptoms can connect.
If you’re suffering from a rare disease or chronic illness or caring for someone who is, you’re not alone. Connect with other patients and caregivers, learn about your condition, find health data, and share your story on CarePlugin. CarePlugin is a free mobile app that matches caregivers, parents, and patients with similar rare diseases or symptoms. Take back control of your health and future by finding the resources and the social health group you need to thrive.
Connect with knowledgeable and motivated patients and caregivers like you. Track your symptoms, share your diagnosis, learn more about your disease, and help others through their healing process. Get support from people who share your disease. Find and show support for chronic diseases, depression, symptoms, and more with a network of patients and caregivers. Share as much or as little about yourself and your condition as you’d like. Whether you have a chronic disease, newly identified disease or mental disease, what you share with whom is your decision. Don’t let your disease isolate you from the world. Connect and learn together with CarePlugin.
- Promote community and connection among rare disease patients and their advocates
A disease is defined as rare in the United States when it affects fewer than 200,000 Americans at any given time. Currently, there are an estimated 25 to 30 million Americans, almost one in ten, living with one of the 7,000 identified rare diseases, disorders, and syndromes. Because so few people have a specific rare disease, the mainstream medical community often overlooks this population when researching treatments and educating medical students. As a result, the average time it takes for patients to receive a rare diagnosis is 4.8 years, and 95% of rare diseases lack an FDA approved treatment. People facing a rare disease diagnosis for themselves or a family member struggle to find doctors who have any knowledge of their disease. They rely heavily on others with shared diagnoses as they are often the experts, or gurus, of their rare disease. The current archaic avenues of connection mean it could take months (if ever) for people afflicted with the same rare disease to find one another.
Connecting people with others in similar health circumstances, whether it is surrounding the premature birth of a child or a family member’s rare diagnosis, is extremely powerful. There are over 25 million people in the United States with one of 7,000 rare diagnoses. However, with so few people diagnosed with any given rare disease, they are underfunded and widely unknown by the medical community. As a result, the average time it takes for a patient with a rare disease to receive an accurate diagnosis is almost five years (it took our family 5 years.) Finding a knowledgeable medical team and treatment plan after a rare diagnosis often takes much longer. The CarePlugin app is like a bullet train for the rare disease community, enabling them to fast forward through the typical roadblocks surrounding a rare diagnosis.
The CarePlugin app helps patients, caregivers, parents, and teens make meaningful connections with others facing a similar health journey. Users across the globe are matched on over 7,000 diagnoses and 20,000 symptoms (provided by the US Genetic and Rare Diseases Information Center (GARD)) and are able to connect with their matches to give support and share health resources. The CarePlugin app allows patients and caregivers to enter their symptoms into their profiles so others with similar symptoms can connect.
- Concept: An idea being explored for its feasibility to build a product, service, or business model based on that idea.
Still exploring our solution and its feasibility before we embark on the development phase.
We are steadily evaluating the costs required to develop the app and how we shall be able to prototype with atleast 10,000 before role out.
- A new application of an existing technology
The CarePlugin mobile app provides a free, simple, real-time, and easily accessible way for every member of the rare disease community to connect with others who share similar diagnoses or symptoms.
We’ve created a tool that empowers people of all ages with a rare disease to take back control of their health and future. Members of the rare disease community are no longer constrained by the lack of doctors, resources, and information on our rare diseases. CarePlugin delivers the most knowledgeable and motivated experts on your rare disease directly to your mobile device.
- Rare Disease Database. The CarePlugin app uses its disease database to match users and includes real-time information on to 7,000 rare (and 500 non-rare) diseases and more than 21,000 symptoms. The database is regularly reviewed and updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.
- Multiple User Types. Many rare diseases are genetic, and several family members may have the same disease. Users can select to be a patient, caregiver, or both.
- Profile. Users can share as much or as little information as they are comfortable with on their profile and decide what (if any) information is publicly viewable by other users. Teen user profiles are always private and only viewable by users 10-17 years old.
- Matching. Users are matched based on an algorithm that determines how closely their diagnosis and symptoms align with other users’ and is filtered to incorporate user-specified preferences like location, age, and user type. Each user then determines whether to connect with each other. Teen users 13 -17 years old can connect and message only with other teens. Adults cannot match with, or view profiles of teens and vice versa.
- Global Disease Map. Users can search the global disease map to find out how many other users share their diagnosis in any location.
- Messaging. When two or more users mutually match, they can message each other through private individual and group chats.
- Symptom Tracker. Users can track symptoms, take notes, and export data trends to share with doctors and specialists.
- Charitable support. CarePlugin donates 10% or more of net proceeds to charitable organizations serving the rare disease community. Users have the ability to designate their favorite charity during onboarding.
- The journey for caregivers of those living with a rare disease is often a forgotten one. CarePlugin will allow millions of fellow caregivers to connect, share, and support one another. Together we will become even greater advocates for our loved ones affected by a rare disease while helping each other heal in the process.
CarePlugin is a social media app that is powered by Machine Learning & Artificial Intelligence, that connects patients, caregivers, and many other patients and caregivers who are caring for or have the same disease as you. Patients and caregivers can use the CarePlugin app to connect with other users that have the same conditions, are experiencing the same symptoms, or using similar treatments. Users can create individual or group messages with connections to share personal stories and health data to support one another and obtain new knowledge on shared diagnoses. Because the app can connect users not only based on disease, but also on symptoms, it is intended to be useful to people who have not yet received a diagnosis, as well as people who may face common issues.
mHealth Gives Clinicians a Platform for Managing Rare Diseases: Healthcare providers are turning to mHealth and telehealth for care coordination and management of patients with rare diseases. Those digital health tools are also helping patients take more control of their treatment.
Backpack Health’s App for People with Rare Diseases in Developing Countries: Interview with CEO Backpack Health, a health-tech company based in Boston, has partnered with two organizations specializing in rare diseases, Care Beyond Diagnosis and FYMCA Medical, to bring their mobile and cloud-based health management application to patients with rare diseases living in low-income countries.
mHealth Economics 2017 – Current Status and Future Trends in Mobile Health The mHealth App Developer Economics 2017, is the seventh edition of the largest global study on mobile and digital health apps. This report is of one of several free reports. This first reports is focused on the current market trends and future market developments. The report results are based on answers of more than 2,400 mHealth app developers and healthcare professionals.
How do you trust technology in Healthcare – Technology surprises us with new things every day. Up until recently AI, robotics, 3D printing, Augmented or Virtual Reality were “restricted” to commercial/entertainment uses, with healthcare lagging behind in adopting them. This has changed quite dramatically the last 2 years. Technology in all its forms is taking healthcare by storm and is well on its way to becoming an integral part of all its aspects.
Use of Artificial Intelligence in Healthcare Delivery –By Sandeep Reddy.
In recent years, there has been an amplified focus on the use of artificial intelligence (AI) in various domains to resolve complex issues. Likewise, the adoption of artificial intelligence (AI) in healthcare is growing while radically changing the face of healthcare delivery.
- Artificial Intelligence / Machine Learning
- Blockchain
- Software and Mobile Applications
Secure browsing is one way that we protect your information. Your activity (ex: posting a status or sending a message) is encrypted, which means it's turned into code so people can't access it without your permission.
If a CarePlugin user is matched to another user, they will see their name, age, status (patient/caregiver/both), shared diagnosis, shared symptoms, location, and when they were last active on the app. Users are free to share as much or as little information as they like in their profiles.
CarePlugin allows you to make certain information private, or to make all of your information public. However, even if you adjust your privacy settings to make everything private, some information is public, no matter what you do. All public information can be seen by anyone, even if they do not have a CarePlugin account. And “anyone” includes other websites, games, and various Web applications. Always-public information – what CarePlugin refers to as your “basic info” — includes:
Information security
We shall develop our technology to be as private and secure as possible. Personal health information shared with CarePlugin will be confidential and encrypted. It's never shared without explicit consent. We're committed to increasing transparency and understanding about how we manage security at CarePlugin.
Our security processes
-We follow ‘security by design.’ That means CarePlugin is designed to be secure from the beginning and throughout the product lifecycle.
We shall always separate user details from health information. Each type of data will be stored separately in servers within the areas of operation.
Through a Global Compliance & Ethics Department helps employees understand and fulfill their security responsibilities. We shall manage the physical security of our offices to control access to data.
-We shall regularly attempt to breach our own security to spot and fix any weak points.
- Women & Girls
- Pregnant Women
- LGBTQ+
- Elderly
- Rural
- Peri-Urban
- Urban
- Poor
- Low-Income
- Middle-Income
- Refugees & Internally Displaced Persons
- Minorities & Previously Excluded Populations
- Persons with Disabilities
- 3. Good Health and Well-being
Current Number = 0
One year Number = 50000
Five Years = 1000,000
CarePlugin seeks to:
- Raise finances to help in the development stages of the product.
- Develop prototypes of the CarePlugin tool for use among different types of semi-skilled health workers
- Introduce an effective referral system across stakeholders within primary healthcare
- Form partnerships with relevant stakeholders, such as local governments and the private sector, to implement our tool on the ground in Africa
To reach the goals mentioned above, CarePlugin seeks to form partnerships that will:
- Enable users to be directed to specific providers in the continuum of care
- Empower frontline health workers to deliver primary care in low-resource settings
In order to achieve our goal will require us partnering with relevant health worker organizations in Uganda, East Africa, Africa and in other parts of the world. We believe in the power of our technology to create long-lasting impact. Establishing partnerships and developing a network of strong supporters is crucial to achieving our mission. Our solution to build and test the platform will only succeed by forming relevant partnerships with NGOs and foundations, in order to start implementation.
We shall base on the number of subscribers, downloads, and expansion/scale ability to new markets. The type of interactions and connections made between users and referrals made directly to healthcare physicians shall also be a key impact indicator. Other impact measurement indicators shall also include; number of partner NGOs, government Ministries of Health created, funding raised and awards won by the company/initiative, as well as the ability to scale the initiative beyond Uganda into other East African, African, and the global markets.
- For-profit, including B-Corp or similar models
Full time
-5 Doctors
-2 Data scientists
-2 ICT Specialists
-2 Business development experts and consultants
Parttime:
-5 ICT consultants
-1 Business incubation hub
-5 clinicians
2-Software engineers
Our team is comprised of a diverse and complementary group of experts in clinical care, public health, health informatics, ML &AI, and human-centered design that provides expert viewpoints from a wide array of fields. Our Ugandan leadership has expertise in rare disease research, rural health needs and national health requirements, while our Executive Director’s extensive experience as an end-user of electronic health records in the East Africa allows our team to draw upon the successes and failures of US-based digital health records. The Project works closely with the Ugandan Ministry of Health to guide or national scale strategy.
Belonging to a medical background our founder has faced the socio-cultural barriers of not being able to have a supportive environment to fulfil his ambitions of serving my Hippocratic oath of serving his fellow community of people with rare diseases while realizing the dearth of health resources. He along with the entire team are well equipped to design, develop and deploy telehealth and mobile health solutions that are cost effective and easy-to-use, thereby creating convenient, accessible and remote health care options for our beneficiaries.
As a Managing Director, he is an experienced Social Entrepreneur with a proven track record of leading an international, award-winning social enterprise, building strong partnerships with NGOs, foundations and government but he is also a victim of rare disease misdiagnosis.
He is a highly dedicated professional working round the clock to bring about the desired outcomes and results expected from my organization. he has a democratic leadership style in the organization that allows for constant feedback and flow of ideas among team members that further improves the likelihood of project success. For 5+ years he has been successfully leading a multidisciplinary team with diverse backgrounds that assesses our beneficiaries’ needs to see what their barriers to care may be and helps to address them by implementing and continually improving our services.
Our Tech Leads have built healthcare and telecommunications solutions. Our Operations Lead has a track record of streamlining operational processes. Our Sales Lead’s pharmaceutical sales background won us 25% of Uganda’s healthcare market in 2 years. Our Finance Lead’s financial management expertise ensures we make sense of the business. Our Community Lead’s experience building communities for startups in Uganda enhances our recruiting efforts, and our Partnerships Lead’s international experience managing startup client relations helps us form partnerships that enhance our business.
We have zero tolerance for any form of discrimination based whether on race, gender, sex orientation etc. We create a mutual ground for competition and those who qualify are added to our organizational culture.
There is an increasing body of evidence that diverse teams of varying racial and ethnic makeup produce better results. They perform better financially, gain a competitive edge when recruiting top talent, experience less employee turnover, and offer greater benefits for those they serve. This is true in both the for-profit and nonprofit sectors. Therefore we strive to respect and work with all human races regardless of race, color, sex, sexual orientation, gender identity, religion, disability, age, genetic information, veteran status, ancestry, or national or ethnic origin etc. We provide mutual and equal ground of employment opportunities for all those who qualify to work with us. Whether white or black, we might be of different color but we are still one people.
For instance, our co-founder is a male, black and Mugwere by tribe.
The project's second co-founder is a white female American. The team's
business development specialist is an albino and a female. This is just a
sample that we are strongly committed to observing and promoting
Diversity, Equity and Inclusion not just in words but also in our
actions, vision, and mission.
My brother and I were all diagnosed with a rare genetic metabolic bone disorder in 2019 called Hypophosphatasia (HPP). There are only a few hundred people who are currently diagnosed with Hypophosphatasia in Uganda. Hypophosphatasia (HPP) is a rare genetic disorder characterized by the abnormal development of bones and teeth. These abnormalities occur due to defective mineralization, the process by which bones and teeth take up minerals such as calcium and phosphorus. These minerals are required for proper hardness and strength. Defective mineralization results in bones that are soft and prone to fracture and deformity. Defective mineralization of teeth can lead to premature tooth loss. The specific symptoms can vary greatly from one person to another, sometimes even among members of the same family. There are six major clinical forms of HPP that range from an extremely severe form that can cause stillbirth to a form associated with only premature loss of baby teeth, but no bone abnormalities. My brother’s diagnosis was especially hard for her to process because she couldn’t find any other teens that had HPP. He felt isolated, anxious and struggled to find someone else her age with HPP to talk to. He came up with the idea to create a FREE APP to instantly connect patients, caregivers and teens with rare diseases or chronic conditions, or those in search of a diagnosis.
- Individual consumers or stakeholders (B2C)
We believe in the power of our technology to create long-lasting impact.
Establishing partnerships and developing a network of strong supporters
is crucial to achieving our mission. The Horizon Prize would
tremendously advance our work, allowing us to connect with relevant
organizations in global health. In addition, mentoring and guidance by
the respective experts within The Horizon Prize and MIT Solve network,
would be also of great support. Through The Horizon Prize we could
increase our visibility and raise more awareness for our work within a
broader audience. We also feel that the Prize can help us emerge as
better leaders for our company as well as support our collective vision
of making sure everyone, everywhere can access free quality and accurate
health information and assistance just by their figure tips through
e-health and m-health solutions. To reach this global vision of health
for all, we require partners, mentors and advisors. We want to reflect
on our experiences and share our knowledge to cross learn and grow. In
addition, receiving mentorship from experts will enable us to expand our
solution sustainably while improving utilization uptake of our
beneficiaries. The resources from the prize will also enable us to have
the needed technical manpower, human resource, software and technology
such as ML & AI, chatbot and automated algorithms that will enable
us to predict health patterns of our target beneficiaries which is
extremely pivotal for us to understand and analyze especially healthcare
needs of our users. The funds will be used to commence our operations
while continuing to build the skills and capacity of health
practitioners to utilize and integrate our services and products in
their practices.
- Financial (e.g. improving accounting practices, pitching to investors)
- Legal or Regulatory Matters
- Monitoring & Evaluation (e.g. collecting/using data, measuring impact)
- Technology (e.g. software or hardware, web development/design, data analysis, etc.)
Our partnership goals are focused on:
- Private and public companies and NGO partnerships to help us develop prototypes of the platform tool adapted for use among different locations and types of semi-skilled health workers
- Partnerships that can help us introduce an effective referral system across stakeholders within primary healthcare
- Form partnerships with relevant stakeholders, such as local governments and the private sector, to implement our tools on the ground in sub-Saharan Africa.
- Strategic Development: We are actively seeking support to improvise the business development strategies.
- Technological Support: We are looking for synergies that help us go well with the use of machine learning and AI to develop our tool while improving our interface for better user experience and engagement.
- Human Resource management – We are looking for a network of healthcare researchers, doctors and specialists across the globe that will be interested to utilize our solution to continue their medical practice but also as consultants and mentors.
- Scale Up – We aspire to build consortium at National and international level to build synergies for sustainable development. We are looking for partners who can match their resources with ours to eventually scale our solution, gain new active users and maximize utilization of our services to a greater number of beneficiaries that may be beyond our reach at the moment.
We aim to develop partnerships with MIT to connect with mentors, experts and advisors to build and expand our AI tool thereby gaining consumer insights, integrating predictive algorithms and supporting our research processes.
We also aspire to expand our partnerships with mobile operators across Africa such as MTN, Airter and Mobilink to broaden its reach by gaining low-cost customer acquisition and market insights, access to mass communication channels including API access for SMS and IVR, access to mass payment channels for easy payment collection processes, access to retail customer touchpoints, access to technical and commercial support and gain visibility and credibility
In addition, we aspire to build partnerships with tech giants such
as Google, Apple, Microsoft, Amazon and Facebook to access cloud
computing, Telemonitoring through wearables, customer data acquisition
and artificial intelligence resources,
We are also actively seeking large organizations and corporations such
as Philip, GE healthcare, Nestle and Samsung to adapt our solution
either for their employees directly or utilize it for their clients as a
white label solution. This will enable us to expand our reach and
customer base.
Team Lead