RareConnect, a meeting point for people living with rare diseases

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RareConnect, a meeting point for people living with rare diseases. Source: RareConnect

This international platform has been developed by non-profit organisations and allows participating in online discussion groups and communities to network with other patients.

RareConnect is a safe and easy to use international platform allowing people living with rare diseases, their families and organisations working in this field to network and participate in global online discussion groups and communities.

The platform collaborates with the main groups of patients with rare diseases around the world and aims to connect people living with these diseases with others around the world to create spaces to meet and discuss specific aspects of each disease, network with patients around the world, share stories and learn from each other.

RareConnect is made up of employees from non-profit organisations such as Eurordis- Rare Diseases Europe and Care4rare Canada and is funded through grants and corporate sponsorships.

The platform is split in several online communities that are specific to each rare disease and discussion groups on topics of a general interest or topics concrete to each disease.

Each community is facilitated by a person that lives with a rare disease and contributes resources, contacts of specialists and evidence-based information.

To facilitate communication with people from around the world and ensure quality interaction, the platform offers integrated automatic translation and also human translation.

At the same time, the platform ensures safe communication by ciphering all messages sent between users and the RareConnect servers using SSL (Secure Socket Layers), to ensure no confidential data are heard or captured and ensuring the protection of users’ data.

Get involved!

People living with rare diseases, their families and organisations working in this field who wish to can register to become members of the community.

You can also contribute to the platform by becoming a facilitator of a group, joining the team of volunteer interpreters or, if you are an organisation working with patients with rare diseases, you may wish to create a specific community for a certain disease.

For further information, you may contact RareConnect by email.