DiseaseMaps is a web service that aims to connect everyone with an interest in particular diseases. The system is open to patients, family & friends, advisers, researchers, healthcare professionals and organisations and there is a map published for aspergillosis. Each stakeholder records where they are based on a worldmap and leaves contact details so that all other users of the system can contact each other and there are provided social & conversational forums for group communication.
This is the first attempt at providing a social map of all people involved in a particular illness and has a number of potential outcomes:
1. Intra-community support such that each group of stakeholders can form relationships with like minded people & organisations
2. Inter-community communication and support which could help patients find and contact medical specialists & organisations, researchers find patient volunteers, researchers find specialised sources of funding and much more.
As of 13th September 2017 there are 41 registered stakeholders on the aspergillosis disease map made up of 36 affected, 2 family and friends, one adviser, one researcher and one organisation.
This is one community that could help everyone involved in aspergillosis but it will only work if there is a critical mass of people joining up, please consider doing so.