RareConnect

RareConnect logo

New online community for PH!

RareConnect, the Rare Disease Communities project, first started with a community for a little known disease group called CAPS. The project is part of the strategic partnership signed in 2009 between Eurordis (European Organization for Rare Diseases) and NORD (US National Organization for Rare Disorders).The 5-language platform now covers over 70 rare disease-specific communities, including, since 2012, a community for pulmonary hypertension. 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. PHA Europe and the PHA USA collaborated to develop the PH community along with EURORDIS and NORD.

The website is split into three sections: What, Meet, and Learn. The What section featu- res patient stories and blog style updates from patients and patient organization representatives. The Meet section is a forum, moderated by volunteers and offers human translation services across five 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. The Learn section is a resource of information in the form of frequently asked questions, documents, recently published news and scientific articles, upcoming events, and patient organization’s contact informa- tion. People interested in discussing PH register on RareConnect. 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.

Last updated: February 11, 2015