The first week of December marked the third international meeting of the RareConnect team. I joined my fellow community managers in sunny Barcelona, Spain to meet and plan 2013 initiatives for RareConnect. In attendance at the 3 day meeting were myself, Online Communities Coordinator for NORD, Denis Costello, Web Communications Senior Manager and RareConnect Leader for EURORDIS, Robert Pleticha, Online Patient Communities Manager for EURORDIS, and our newest colleague, Marta Campabadal, RareConnect Junior Manager for EURORDIS.

RareConnect is an online platform for rare disease patients. This project stems from a direct partnership of NORD and EURORDIS created in 2009. The idea of this joint collaboration is to think globally on issues involving rare diseases. Specifically, RareConnect provides a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.

RareConnect connects rare disease patients globally by bridging the conversation gap and providing human translation to registered users. For the first time ever, the rare disease patient can counteract feelings of isolation by connection with others who share their same experiences. Registered users benefit additionally by learning about research and the latest treatments, sharing their own experiences, finding helpful resources from experts, and connecting with disease specific advocacy organizations. For more information on the platform. 

Specific initiatives for 2013 include improved technical upgrades to the platform, an instant Google translate feature (this will be an alternative to our high-quality on-demand human translation), and expanding our series of successful moderator webinars. In addition to this, we plan on adding an abundance of new communities throughout the year. We work directly with established, disease-specific patient organizations on this project to ensure quality control. Currently, we have 33 online communities but we are always looking for new community candidates. If you are interested in learning more about the project, please do not hesitate to contact me at afreitas@rarediseases.org. You can also find us on Facebook  or on Twitter!