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RareConnect launches online community for people with Sarcoidosis
RareConnect Communities

RareConnect launches online community for people with Sarcoidosis

17-02-2021

Hosted by trusted patient advocates, RareConnect is a place where rare disease patients can connect with others globally.

The EU-IPFF welcomes the creation by @Eurordis on their RareConnect platform of an online community for Sarcoidosis patients. In rare cases Sarcoidosis patients develops pulmonary fibrosis.

RareConnect is a patient-led initiative - a safe environment where privacy is respected and where trusted information is shared via real patient representatives.

Patient organisations partner with RareConnect, itself an international patient organisation, to create communities and provide moderators from within their network. Each community on RareConnect is moderated by a person living with a relevant rare disease and linked to a trusted patient group. Furthermore all moderators are trained in the use of our online communities charter and supported on a daily basis by a team of community managers.

The RareConnect team is made up of employees from the non-profit organizations: EURORDIS- Rare Diseases Europe and Care4Rare Canada. Funding for RareConnect comes from grants and corporate sponsorship.

EU IPFF

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