14th of January 2019

RareConnect, an initiative of Eurordis, has recently created an online community for mitochondrial diseases in close collaboration with a mother and patient advocate. This community is meant to be for all those affected by mitochondrial diseases and especially for all those who don't have an identifiable genetic mutation. 

The highlights of the community are:

- It is available in 12 languages

- It offers peer-to-peer support

- A translation system guarantees the translation of all posts and stories

- It represents a meeting point for families that do not speak English or cannot count on any patient associations within their reach

RareConnect/Eurordis aims to transform this community into a place that can fulfil the needs as a patient or caregiver, where they can have meaningful connections with other members worldwide.

There are still many people living in all regions of the world that have yet to be properly diagnosed with a mitochondrial disease as not everyone has identifiable genetic mutations. RareConnect is reaching out to patients who wish to share their stories of diagnosis and personal life experience. Stories can be submitted anonymously to your community. Story submissions will assist others in their journeys. Availability of testimonies, awareness and educational resources for Mitochondrial diseases will assist in early detection and diagnosis of these disorders. 





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