Confika

Rare diseases are really hard and expensive to navigate both for the patients and for their care givers. Their scarce nature makes their diagnosis difficult and limits the number of scientific research being made on them. 

Our solution aims at increasing awareness around rare diseases by providing a platform that functions like a support group for patients of rare diseases.

Rare diseases like any other type of illness constitute a challenge faced by those that are victims of them as well as their families. We believe being emotionally strong is very important to face such challenges and support groups are awesome providers of emotional strength. There is nothing like being part of a community of people going through the same challenge as you to help you find the strength and courage you need to face it head-on especially when everybody else around you seems stranger to your pain.

There are nearly half a billion people in the world that are affected by more than 7000 recognised rare diseases and most of these diseases are still barely understood by scientists. With so little information available around those diseases most of their patients feel lost and often times fall prey to misinformation. 

To add to all that, there is no designated platform where these users could go and ask for support in some cases where they might need a donor or financial support for instance. Going to a platform like YouTube or Instagram might work but only if they manage to get their posts to reach the right person which is not likely unless their posts go viral and get millions of views.

We provide an online support group for people with rare diseases. Imagine a social media platform with different channels or support groups, each dedicated to a specific topic like sickle cell anemia, testicular cancer or germ cell ovarian cancer.

A user suffering from a certain rare disease would just search for a channel with the name of his/her disease and in an instant get access to a community of people all around the world, talking about his/her disease. 

Here is how a support group works: 

• The moderation is done by the platform meaning the platform decides who talks and when. To do so, it maintains a list of participants and activates their microphone/camera/both when their turn comes.
• Any user can enter a support group and decide to participate or to just listen.
• A support group can be in live-mode when it has users on its list of participants or in demand-mode when its participants' list is empty.
• When in demand-mode, old participations are played from oldest to earliest and there is an option to skip forward/backwards.
• A user can switch to live-mode by selecting the participate button which allows him to testify about his sickness.
• You can like/dislike participations.

Our solution, Confika, provides all people suffering from a rare disease with a community of people living through the same challenge as them. It helps the user feel less alone and learn more about his/her disease. This can be very helpful to build emotional strength which is always very important when fighting a disease.

In addition to all that, Confika creates awareness around rare diseases and can serve as a great platform where people can find donors or financial support to face their diseases. 

Support groups are very effective for people facing any sort of challenge in life whether it is drug addiction, mental health or in this case a rare disease. This is because support groups help create communities of people affected by similar challenges in order for them to help each other out. 

By providing access to people all over the world with a support group right at their fingertips, our solution aligns well with the challenge of promoting connections between rare disease patients and their advocates. It also unlocks collaboration between patients.

We selected the prototype stage because we are still getting off the ground and have raised no institutional capital yet.

The innovation is in the modification of the model of your typical social media application. Instead of showcasing users's accounts, Confika showcases the different support groups and their contents. In doing so, it puts all users of the application at the same level. There is no influencer, merely communities of people leaving testimonies about their illnesses.

Confika seeks to implement the dynamics of a real support group by allowing each user to either participate in the discussion or not, and by allowing one user to talk at a time. 

This could help millions of people around the world suffering from rare diseases, find great support communities. Such communities apart from being source of great support for the patients could also help create awareness around those diseases as well as serve as very helpful ways to find a donor or to get financial support for the patients.

We use react for our frontend and django at the backend.

Our live-mode is powered by websockets which allow us to broadcast the ongoing testimony to all users in a given support group.

Our on-demand mode also uses websockets to broadcast previous participations to all users in a given support group.

Confika is a social media platform where people go to feel supported or to provide support for others.

The idea of a social media platform with different rooms dedicated to different subjects is not a new one and has been successfully used by platforms such as Reddit and others.

 The idea of a support group where people affected by the same challenge get together to testify about their situations, is also not a new one. Support groups have been used successfully on multiple occasions to help people suffering from drug addiction, mental health, or facing other sorts of challenges, either hill or find the strength to keep fighting.  

Our solution combines both technolgies for the benefits of the patients.

This does present the risk of misinformation. Some users in a certain support group might spread some false information about a certain disease and advertise some false cure to that disease. 

To mitigate that risk, our terms of service forbids any user to recommend any sort of cure for a disease even if he/she is a doctor. Participations where users infrige on that rule can be flagged by other users and taken down.

Users' participations in support groups will not be used for marketing purposes.

We currently only have a handful of users: 5.

We expect to be serving up to 5000 people in one year and at least a million people in five years.

Our impact goal for the next year is to have 100 support groups on our platform with on average 50 participants in each one.

For the next five years our impact goal is to have 7000 different support groups (one for each recognised rare disease) with an average of 100+ people in each one.

To achieve these impact goals, we intend on using targeted marketing on platforms such as Youtube, Facebook, Google, etc.

We will basically try and replicate the same marketing strategies other social media platforms use to create awareness around their platform. To retain users on our platform, we will be collecting a lot of feedback from them on which features they like and which ones they do not like.

We measure our progress toward those impact goals through these metrics:

• Number of users of the platform
• Number of support groups
• Number of participants per support group

5 full-time staff

We have a diverse and complementary team of experts in computer science and psychology majors. We also have one person in our team that suffers from a rare disease. This diversity of people in our team is very important in figuring out the right mechanisms to put in place on the platform.

We have diversity goals that we plan to reach as soon as we start recruiting.

• 50/50 split between male and female staff
• Have at least a quater of our staff be composed of persons with a rare disease

We do not have a real leader since we are all co-founders of the platform but we do have one co-founder who has a rare disease.

We are applying to The Horizon Prize to get the mentorship support we so need in our marketing efforts.

We are also applying to grow our network as well as get some funding in order to grow our project much faster.

We will use the financial support to solve our chicken and egg problem.

We will also need mentoring in branding and marketing strategies as well as additional help expanding our client base.

• Martin Trust Center for MIT Entrepreneurship
• MIT Bootcamps
• We are open to meet with interested Solve Members that you might recommend.