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X-WR-CALNAME:Northern Ireland Rare Disease Partnership
X-ORIGINAL-URL:https://nirdp.org.uk
X-WR-CALDESC:Events for Northern Ireland Rare Disease Partnership
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DTSTART;TZID=Europe/London:20251016T110000
DTEND;TZID=Europe/London:20251016T120000
DTSTAMP:20260410T201907
CREATED:20250927T154241Z
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UID:6051-1760612400-1760616000@nirdp.org.uk
SUMMARY:Armagh Power of Connection Group
DESCRIPTION: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 support\, guidance\, and signposting to help you navigate the challenges of living with a rare condition. What may feel rare to you is often a shared experience in our community\, and you are not alone.
URL:https://nirdp.org.uk/event/armagh-power-of-connection-group/
LOCATION:Dobbin Street Community Center\, 11A Dobbin St\, Armagh\, BT61 7QQ\, United Kingdom
ORGANIZER;CN="Northern Ireland Rare Disease Partnership":MAILTO:support@nirdp.org.uk
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DTSTART;TZID=Europe/London:20251008T140000
DTEND;TZID=Europe/London:20251008T160000
DTSTAMP:20260410T201907
CREATED:20250927T154634Z
LAST-MODIFIED:20250927T154755Z
UID:6054-1759932000-1759939200@nirdp.org.uk
SUMMARY:Derry/Londonderry Power of connection Group
DESCRIPTION: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 support\, guidance\, and signposting to help you navigate the challenges of living with a rare condition. What may feel rare to you is often a shared experience in our community\, and you are not alone.
URL:https://nirdp.org.uk/event/derry-londonderry-power-of-connection-group/
LOCATION:Ebrington Hotel\, The Ebrington Hotel\, 69-72 Ebrington Sq\, Londonderry\, BT47 6FA
ORGANIZER;CN="Northern Ireland Rare Disease Partnership":MAILTO:support@nirdp.org.uk
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251002T150000
DTEND;TZID=Europe/London:20251002T160000
DTSTAMP:20260410T201907
CREATED:20250927T150627Z
LAST-MODIFIED:20250927T150627Z
UID:6035-1759417200-1759420800@nirdp.org.uk
SUMMARY:NI Rare Conditions Organisation Forum
DESCRIPTION: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. \nPlease sign up:https://forms.gle/qS8S1cuyX68oEsQg9
URL:https://nirdp.org.uk/event/ni-rare-conditions-organisation-forum/
LOCATION:Online
ORGANIZER;CN="Northern Ireland Rare Disease Partnership":MAILTO:support@nirdp.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251001T173000
DTEND;TZID=Europe/London:20251001T183000
DTSTAMP:20260410T201907
CREATED:20250927T153036Z
LAST-MODIFIED:20250927T153036Z
UID:6046-1759339800-1759343400@nirdp.org.uk
SUMMARY:Chat Rare
DESCRIPTION: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.  \nIt’s a safe space for people who are:  \n\nUndiagnosed\, rarely diagnosed\, or still waiting for answers through the genetic process \n\n\nFeeling lost\, isolated\, or that something is wrong\, but can’t find a clear explanation \n\n\nAlready part of another rare disease support group (you’re still very welcome here\, too) \n\nChatRare is open to everyone: parents\, children\, carers\, people living with a rare condition themselves\, and even extended family. From the youngest to the elderly\, all are welcome to join.  \nIf you’re feeling isolated\, lonely\, or just need to talk to someone who understands\, please come along. This mixed group brings together people with different conditions to support one another.  \nIf you can’t make it to a physical Northern Ireland Rare Disease Partnership (NIRDP) support group\, ChatRare is your online alternative—we’ll be here for you.  \nIt will be held on the 1st of every month\, so it’s 1st October & 1st November  
URL:https://nirdp.org.uk/event/chat-rare/
LOCATION:Online
ORGANIZER;CN="Northern Ireland Rare Disease Partnership":MAILTO:support@nirdp.org.uk
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DTSTART;TZID=Europe/London:20250929T080000
DTEND;TZID=Europe/London:20251024T160000
DTSTAMP:20260410T201907
CREATED:20250927T115713Z
LAST-MODIFIED:20250927T115713Z
UID:6028-1759132800-1761321600@nirdp.org.uk
SUMMARY:Cask for Kids -Fundraising Challenge
DESCRIPTION:🌟 Support Children with Rare Conditions 🌟 \nNorthern Ireland Rare Disease Partnership – Mental Health Project \nChildren living with rare conditions face unique and overwhelming challenges every day. Their needs go far beyond the medical – they deserve mental health and emotional support too. \n📊 Children and Rare Diseases – The Reality \n70% of rare conditions begin in childhood. \n30% of children born with a rare disease will not live to see their 5th birthday. \nThese are not just numbers – they are children and families facing extraordinary difficulties. \n💔 How Rare Conditions Affect Children \nChildren with rare diseases are among the most vulnerable in society. They may face: \nDelayed diagnosis and complex medical journeys \nMultisystemic disorders and comorbidities \nDevelopmental delays and physical disabilities \nEmotional\, social\, and cognitive challenges \nFrequent hospitalisation and prolonged absences from school \nThese struggles impact the whole family\, not just the child. \n👨‍👩‍👧 The Hidden Impact on Siblings \nSiblings of children with rare conditions are often overlooked\, but the challenges they face are profound: \n75% of young siblings help with their brother or sister’s care \n50% consider themselves to be carers \n50% say their mental health has been affected \n60% say their parents can’t always attend school events because of their siblings’ needs \n91% of older siblings (17–25) said their education was impacted \n52% received no support at all \nThese children often miss out on “the ordinary” – time with friends\, holidays\, birthdays\, or simply having their parents’ attention. They carry worries far beyond their years\, including fears about their siblings’ future care. \n💚 Why We’re Fundraising \nWe are raising money to provide group and individual mental health support for children affected by rare conditions. These sessions will give them safe spaces to share\, heal\, and grow stronger together. \nThis is part of the Community Challenge with Cash for Kids. \nWe keep every pound we raise. \nThe group that raises the most wins an extra £5\,000! \n🙌 How You Can Help \nEvery donation\, big or small\, makes a real difference. After donating\, we’d love if you could also leave a photo or video support message – it means the world to the children and families we support. \nTogether\, we can bring hope\, resilience\, and care to children living with rare conditions. \n✨ Thank you for standing with us. ✨
URL:https://nirdp.org.uk/event/fundraising/
ORGANIZER;CN="Northern Ireland Rare Disease Partnership":MAILTO:support@nirdp.org.uk
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