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 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 […]

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 […]

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 […]

At these small events, you can join someone from our EB Community Support Team and other DEBRA members for tea, coffee, and conversation in a local community space. For our Belfast event this November, we’re excited to be hosting it at the Titanic Hotel, in the heart of Belfast’s Titanic Quarter.

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 […]

No matter what kind of zebra you are, you'll be really welcome at the first Rare and Rarely Known conditions meeting in Antrim Library, 31st January, 12 noon - 2.30 pm. Come connect with the community! Event Link - https://fb.me/e/3ZFnrLCW5 Event supported by NI Rare Disease Partnership and Ehlers-Danlos Support UK