Zebra Health Net
Connecting rare disease patients, empowering one zebra at a time
(WiP website: https://zebrahealthnet.org)
-rare disease patients suffer from multiple challenges in healthcare
-lack of patient education resources
-lack of protected disease-specific platform free of commercial/pharmaceutical motives
-lack of evidence-based treatment guidelines that is based on statistically significant studies
-challenges in reaching the final diagnosis
-prolonged referral process from PCP to out-of-state disease-specific specialists
-challenges in identifying relevant clinical trials to enroll
-challenges in exchanging medical data across the state line, across medical institutions
-difficulties enrolling enough rare disease patients in a clinical trial to achieve statistically meaningful results
-a web-based portal connecting patients, clinicians, and researchers
-a place to build patient registries
-a place for community to develop around a specific rare disease
-a human-centered collaborative platform that recognizes the needs of all participants
Initial pitch video (from MIT medicine grand hack)
- Build 5 rare disease communities in 3 years?
- Raise $100,000 in funding in 3 years? (we are happy to raise more if possible)
Perks & Benefits (also known as compensation):
- aid multiple rare disease communities and 1 in 10 people have a rare disease - you would help people you know directly!
- work with passionate people who bring many different perspectives to the table
- as many virtual hugs from community members as you can handle.
- free advice on starting your own microbrewery/winery/distillery
- free advice on why not to go to medical school. Or why to.
- free advice on how to set up your own AWS account.
- recipes for good Indian and Korean food.
What we are looking for:
-full stack developers
-investors and incubators
-additional rare disease community members to help us test out the developing platform
We are building a website for Zebra Health Net. The current site is at https://zebrahealthnet.org.
Software development background: The first version of this site was hosted on AWS and built using React-Apollo-GraphQL-Neo4J. Subsequently, we moved the site to an internal hosting server running Ubuntu, and rebuilt the website using Wordpress. This version is currently live at the link above. The website is in very early stage development; here are the primary tasks required for the site to be fully operational:
Set up user accounts with authentication. These accounts are for at least 3 types of users: patients, their careteam (physicians, primarily), and clinical researchers (academic researchers, primarily).
Build a strong encryption system to protect patient information.
Build a database (most likely nosql, graph-based, but we are not locked in that way) for patients, their lab reports, their personal data, their medical images, etc.
Build a front-end UI which is easy to navigate for patients who may not be computer-savvy.
Build in UI for people to form groups (e.g. based on geolocation, disease, gender, age, etc). Potentially bundle in slack and/or discord channels
Build in ability for patients to control access to their data.
Build in ability for allowing researchers to see limited range of data as controlled by the patients.
Build in a query engine for querying across patient datasets, and visualizing results at the summary level for the site, as well as visualizing data for individual patients.
We welcome help in any of these areas. This a comprehensive list of the whole project so that current development is informed by anticipated future development. We are not wedded to any particular software for building the framework; the only conditions are that the software be freeware (we are a zero-fund startup) and can be run on ubuntu platform (we have ubuntu systems up and running, and it is just not worth it for us to switch that platform). Any software developer would be expected to provide extensive documentation of their work, and follow best practices for software coding.
-provisional patent under review by a patent expert
Name & Role
Jun Park MD
Converts bottom-of-pot coffee into great ideas (sometimes)
Vinay Pai, PhD, MBA, Sage Advisor (also a thyme advisor)
Converts great ideas into supercalifragilisticexpialidocious concepts
John Metzcar MS, Patient Advisor and PhDs student
3.14159265358979323846 2643383279 5028841971 6939937510 5820974944 5923078164 0628620899 8628034825 3421170679
Dhruv Pai, Student-in-chief
Rooted in STEM, branching into multidisciplinary leaves.
이메일 : email@example.com (for technical Q in english), firstname.lastname@example.org (non-technical 한국어 문의)