Rare Disease Communities

The Rare Disease Communities project is part of the strategic partnership signed in 2009 between Eurordis, the European Rare Disease Organization and NORD, the National Organization for Rare Disorders. The communities are guaranteed by Eurordis and NORD with a view towards fostering international collaboration amongst patient groups and protecting the voice of patients from purely commercial interests.

The main idea behind the project is to create an online social network for patients and caregivers living with rare diseases in order to enable the sharing of experiences and increase access to quality information.  International patient organizations collaborate to develop these communities along with Eurordis and NORD. Patient organizations play a key role in governing and communicating to the community, recruiting forum moderators, and being sources of information to patients and their families.

The website is split into three sections: What, Meet, and Learn. The What section features patient stories and blog style updates from patients and patient organization representatives. The Meet section is a forum, moderated by volunteers and offering human translation services across 5 languages: English, French, Spanish, Italian, and German. Since patients and families are spread thinly across the globe, it is vital to create a space where information can be shared with the best possible translation.  Finally, the Learn section is a resource of information in the form of frequently asked questions, documents, recently publish news and scientific articles, upcoming events, and patient organization’s contact information.

Users interested in discussing these diseases register on the website. After registering, a user can upload their story on living with the disease through a link in their profile page. The story then automatically is added to the What section and is translated into all of the platform’s languages. Users can also participate in Forum discussions or post their own questions. If a user sees a message on the Forum that is not in their language (French, German, Italian, Spanish, or English), they request a translation be made. Within a few hours, the message is translated and uploaded automatically to the website. The user that requested the translation is also sent an email with the translated content.

The project is financed by European Commission, the French Telethon (AFM) and the French Federation of Pharmaceuticals (LEEM) and a diverse array of corporate partners who play no role in the operation of these communities.

Any questions on the Rare Disease Communities project can be addressed to Rob Pleticha, the Online Patient Communities Coordinator at Eurordis at: robert.pleticha@eurordis.org

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