RareConnect.org, an initiative of the European Organization for Rare Diseases, EURORDIS, includes nearly 70 online communities for different rare diseases. Patient groups, patients, and families are choosing RareConnect because they have the opportunity to join together with others from around the world in a shared project to collect knowledge and move forward understanding of their rare disease. Not only are they communicating in a safe place where data is not shared with 3rd parties, members can also take advantage of human translations across English, German, French, and Italian.

1. RareConnect.org, an initiative of the European Organisation for Rare Diseases, 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.
Why create an online community on RareConnect?
 Join together with other patient associations in a shared project
 Put an international face on the disease by collecting stories from around the world
 Get more traffic and referrals to your patient group from the international community
 Help gain insight into international issues faced by people living with the disease
 Benefit from human translation to read all stories added from around the world and participate in conversations on the Forum
What sets RareConnect apart?
 Human translation across: English, Spanish, French, German, and Italian
 Moderation by representatives of patient groups
 Dedicated support and moderation from 2 community managers at EURORDIS
 Your patient group activities are highlighted on the community and social media
 All conversations are saved and tagged by subject. Facebook groups delete past conversations and history
 An entry point to becoming more involved in other EURORDIS advocacy projects
 Patient focused community: data is never sold, no advertising
What do I need to do next?
 Contact Rob: Robert.pleticha@eurordis.org with any questions
 Decide this is a project that many hypoparathyroidism patient groups want to participate in
 Find a volunteer moderator within your association (3-4 in total are needed to start)
 Send in information and your website and logo to EURORDIS
 We create a “Test” community, add different resources from around the globe, and launch when ready
Visit some of the communities at www.RareConnect.org to see the project in action