Friends of ADCY5

A social network for rare diseases.

Josh Cancio, Manas Nair, Jessica Nguyen, Hammad Usmani

This repository for version control hosts code for the app associated with Friends of ADCY5.

Demo

Screenshots are also available in the /docs folder.

Overview

This project aims to address the critical challenges faced by individuals dealing with rare diseases, particularly focusing on ADCY5-related Dyskinesia, an ultra-rare condition with fewer than 500 known cases worldwide. The lack of resources for finding specialized doctors and connecting with others facing the same rare conditions underscores the need for a dedicated platform to bridge these gaps.

By leveraging data analysis, geocoding, and web development technologies, we are building a solution that not only facilitates the discovery of healthcare professionals with expertise in rare diseases but also fosters connections among patients. Our goal is to cultivate an empathetic medical community that prioritizes trust, thereby encouraging research and funding towards finding treatments or cures.

Project Components

• Web Platform: A React-based web application that provides an intuitive interface for patients and doctors to find information, connect, and share experiences.
• Geocoder and Neo4j Database: Utilizes geocoding to map out the locations of specialists and integrates with Neo4j for managing complex data relationships.
• Data Analysis Scripts: Python scripts (GetResults.py, JsonToCsv.py, ParseJson.py, etc.) for processing and analyzing data related to ADCY5-related Dyskinesia, including research publications, patient reports, and doctor profiles.
• Data Visualization: Aims to generate comprehensive reports and visualizations that reveal patterns and deficiencies in the research on allelic variants of ADCY5.

Objectives

• Establishing Trust: Enhance the relationship between patients and doctors by focusing on research interests and empathetic engagement.
• Connecting Patients and Doctors: Create a network where patients can easily find and connect with doctors who have been involved in research related to their condition.
• Promoting Research and Funding: By highlighting the needs and gaps in the current research landscape, we aim to attract interest and funding towards finding viable treatments or cures.

Getting Started

To contribute to this project or set it up locally, please follow the instructions in the respective directories:

• Web Application: Navigate to Single Webpage/react-website-v1-master for setup instructions.
• Data Processing: For scripts related to data fetching and analysis, refer to the root directory. Each script includes detailed comments on its purpose and usage.

Contributing

We welcome contributions from researchers, developers, healthcare professionals, and anyone interested in making a difference in the lives of those dealing with rare diseases. Please read our contributing guidelines for more information on how to get involved.

License

This project is licensed under the MIT License.

Acknowledgments

• National Organization for Rare Disorders (NORD)
• ADCY5.org
• Jocelyn Duff from CMT4j
• Harvard University Biotechnology Club
• Special thanks to the patients, families, and doctors who have shared their stories and experiences, inspiring this project.

Contact

For more information, support, or to contribute to the project, please contact one of the authors.

Let's work together to make a difference in the rare disease community, starting with ADCY5-related Dyskinesia.