RareConnect reaches important milestone with 50th rare disease community!

RareConnectRareConnect has reached an important milestone with its 50th rare disease online community for multiple endocrine neoplasia! 

RareConnect, an initiative of EURORDIS, is a growing online network for rare disease communities, bringing together thousands of patients, families, and groups who might otherwise be isolated. Through RareConnect, patients and those who care for them can communicate, sharing experiences and information in a safe, moderated online forum. With human translation available at no cost to participants, RareConnect allows patients from different countries to interact in English, French, German, Italian or Spanish languages. 

RareConnect communities are supported by a network of over 200 moderators who are nominated from the 400 partnering patient organisations. Currently, the platform gathers together more than 60,000 visitors per month from over 200 countries. 

RareConnect supports its members in sharing innovative solutions to allow for a better quality of life. Information on managing daily life with a rare disease is valuable and difficult to find in different languages.  RareConnect protects and translates that information, so a larger audience of patients can learn innovative management of treatments, care, and service access.

Robert Pleticha, Online Patient Communities Manager, and Marta Campabadal, Online Patient Communities Coordinator“With the 50th community (for Multiple Endocrine Neoplasia, we continue to see patient associations being leaders in conversations around patient-generated solutions to everyday management of a disease,” observes RareConnect community manager Rob Pleticha.

Patient innovations range from how to schedule weekly therapy appointments, the importance of sharing adverse reactions to medications, location of Centers of Expertise, and techniques to navigate the clinical trials process. RareConnect also has an impact on the psychological well being of its thousands of members.

As one member shared on the forum, “I never wanted to accept my condition... and never believed it could be a disease. Thank you all for your support and answers. I can say that you guys saved my life.”

In 2014, RareConnect will continue its commitment to serving the rare disease community by adding the following new features and tools:

  • Portuguese and possibly additional languages
  • At least 15 new online communities for rare diseases
  • More webinars, polls, infographics and other new content and features 
  • RareConnect for mobile devices

Louise Taylor, Communications and Development Writer, EURORDIS

 

Page created: 22/01/2014
Page last updated: 20/01/2014
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases