Share4Rare: a unique community of patients that you would never have imagined
Disease burden of undiagnosed patients from a holistic perspective
One of the greatest challenges that rare disease patients and families have to face is the feeling of loneliness. This emotion is present during the diagnostic process — which may last for years — and is also felt once they are diagnosed due to the lack of information available about their condition. The small patient numbers, the geographical and language barriers or the diversity of symptoms for each rare disease make it difficult to share the patients’ knowledge and to analyze the medical information in an effective way.
Considering all the above we have designed People Like Me, the new tool to get in touch and relate with patients like yourself, share your experiences and knowledge and improve the management of your disease.
What is People Like Me?
People like me is the new Share4Rare feature that enables the user to visualize the community of people around him/her organized by similarity or proximity to the rest of the users.
During the registry process every user introduces a series of symptoms manifested by the patient and a personalized profile associated to those symptoms is created. These symptoms enable to establish similarities networks that connect registered people, creating a graphic that represents those users who are closer to you.
This tool facilitates users to contact with other users who are similar to them using a private messaging app, therefore eliminating the usual barriers tackled by rare disease patients and breaking isolation. Data are updated in real-time on a daily basis, so every time a user enters the community the graphic is modified as connections are reestablished.
It is likely that you find foreign users in your similarities graphic: do not worry. Share4Rare has already included automatic translation to its features (near the Answer button, marked in green in the image below) so you will be also able to communicate without language barriers, both by private messaging and inside the Questions and Answers community.
In My dashboard you will see the graphic including a list of the people who are closer to you inside the platform. But remember: in order to get in touch with them you must be validated and the private messaging service must be enabled.
What is My Relevant Questions?
Once you access the Questions and Answers community, you will see a new feature called My Relevant Questions. In this section you will observe all the questions rose on the community by other users, and these will appear in order of relevance for you. This relevance is calculated by the Share4Rare algorithm. Moreover, you will be able to filter those questions related to a topic of your interest. Using this feature we hope to offer relevant and personalized information to every user and to help to create communities where users a feel that they are accompanied by their equals.
Share4rare Artificial Intelligence algorithms enable to create a flexible global network that moderates and modulates interactions according to the interests of the users. This innovative design has been made possible thanks to the contribution of all the patients who participated in the development of the platform. Now is the time to make the challenge of reaching all patients wherever they are possible, and to create a unique community to meet the needs of every patient. Will you join us? We will be waiting for you in Share4Rare!
