ChatRare is an online support group for anyone in Northern Ireland (and beyond) who may find it difficult to attend in-person groups—whether you’re joining from your bed, your home, or anywhere else.  It’s a safe space for people who are:  Undiagnosed, rarely diagnosed, or still waiting for answers through the genetic process  Feeling lost, isolated, […]

The Northern Ireland Rare Disease Organisations Forum is a partnership bringing together all rare disease and rare condition organisations operating in Northern Ireland, as well as those interested in contributing to the advancement of rare disease and rare condition knowledge. The forum also includes organisations that support rare disease groups in their work on the ground, such as health services, benefits offices, and advocacy groups. By collaborating with these supporting organisations, the forum strengthens the capacity of rare disease organisations to succeed in their mission.

Our community support groups, such as Derry/Londonderry, are here for anyone living with a rare, undiagnosed, underdiagnosed, or very rarely diagnosed condition. These groups provide a safe space to meet, share experiences, or simply have a conversation—even if you’re unsure what’s happening in your own situation. While we do not provide medical advice, we offer […]

Our community support groups, such as Omagh, are here for anyone living with a rare, undiagnosed, underdiagnosed, or very rarely diagnosed condition. These groups provide a safe space to meet, share experiences, or simply have a conversation—even if you’re unsure what’s happening in your own situation. While we do not provide medical advice, we offer […]

Our community support groups, such as Armagh, are here for anyone living with a rare, undiagnosed, underdiagnosed, or very rarely diagnosed condition. These groups provide a safe space to meet, share experiences, or simply have a conversation—even if you’re unsure what’s happening in your own situation. While we do not provide medical advice, we offer […]