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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;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260410T184835
CREATED:20260119T110836Z
LAST-MODIFIED:20260205T171834Z
UID:6174-1772236800-1772323199@nirdp.org.uk
SUMMARY:Rare Disease International Conference
DESCRIPTION:Dear Colleagues and Friends\, \nWe are delighted to invite you to attend the Northern Ireland Rare Disease Partnership One-Day International Conference – \nMore Than You Can Imagine: \n    Rare Realities. \nIt is a unique opportunity to come together to explore current challenges\, share knowledge\, and strengthen collaboration within the rare disease community. \n  \nThis Conference will bring together Individuals living with rare diseases\, patient organisations\, families\, clinicians\, researchers\, policymakers\, industry partners\, health & social care workers\, educators\, government\, and advocates from Northern Ireland and beyond. Through a programme of expert speakers\, discussions\, and shared experiences\, the event will focus on improving understanding\, visibility\, and outcomes for those affected by rare diseases. \n  \nAttendees can expect insightful presentations on key developments in rare disease policy\, care pathways\, research\, and lived experience\, as well as opportunities to connect with others. Whether you live with a rare condition yourself or support the community in a professional or voluntary capacity\, your voice and presence are vital to this event. \n  \nWe strongly encourage you to join us for this pivotal day of learning and connection; your participation is key to driving the change we want to see. \nDate\, location\, and complete programme details\, along with registration\, are available via \nEventbrite. \n  \nWe have negotiated a discount rate with the Ebrington Hotel for £185.00 per night\, single/double occupancy. If you are booking\, please mention the Conference to avail of the special rate. \nThe Ebrington Hotel \nWe look forward to welcoming you. \n  \nKind regards\, \n  \nThe Northern Ireland Rare Disease Partnership Team
URL:https://nirdp.org.uk/event/rare-disease-international-conference/
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260219T110000
DTEND;TZID=Europe/London:20260219T130000
DTSTAMP:20260410T184835
CREATED:20260119T111615Z
LAST-MODIFIED:20260119T111615Z
UID:6177-1771498800-1771506000@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-3/
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260203T180000
DTEND;TZID=Europe/London:20260203T190000
DTSTAMP:20260410T184835
CREATED:20260119T110320Z
LAST-MODIFIED:20260119T110320Z
UID:6172-1770141600-1770145200@nirdp.org.uk
SUMMARY:Omagh Support Group
DESCRIPTION: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 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. \nPlease join this meeting through this link: \nOmagh Support Group | Meeting-Join | Microsoft Teams
URL:https://nirdp.org.uk/event/omagh-support-group-3/
LOCATION:Online
ORGANIZER;CN="Northern Ireland Rare Disease Partnership":MAILTO:support@nirdp.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260131T120000
DTEND;TZID=Europe/London:20260131T143000
DTSTAMP:20260410T184835
CREATED:20251105T173737Z
LAST-MODIFIED:20260119T105342Z
UID:6155-1769860800-1769869800@nirdp.org.uk
SUMMARY:Antrim Power of connection Group
DESCRIPTION: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\nEvent supported by NI Rare Disease Partnership and Ehlers-Danlos Support UK
URL:https://nirdp.org.uk/event/antrim-power-of-connection-group/
LOCATION:Antrim Library\, 10 Railway St\, Antrim\, BT41 4AE\, United Kingdom
ORGANIZER;CN="Northern Ireland Rare Disease Partnership":MAILTO:support@nirdp.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251201T000000
DTEND;TZID=Europe/London:20251201T000000
DTSTAMP:20260410T184835
CREATED:20251105T173110Z
LAST-MODIFIED:20251105T173313Z
UID:6145-1764547200-1764547200@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/chat-rare-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251120T180000
DTEND;TZID=Europe/London:20251120T193000
DTSTAMP:20260410T184835
CREATED:20251105T173548Z
LAST-MODIFIED:20251105T173548Z
UID:6152-1763661600-1763667000@nirdp.org.uk
SUMMARY:Talk Money Event
DESCRIPTION:
URL:https://nirdp.org.uk/event/talk-money-event/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251120T120000
DTEND;TZID=Europe/London:20251120T160000
DTSTAMP:20260410T184835
CREATED:20251007T072613Z
LAST-MODIFIED:20251007T072613Z
UID:6129-1763640000-1763654400@nirdp.org.uk
SUMMARY:Debra Local Connect - Belfast
DESCRIPTION: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.
URL:https://nirdp.org.uk/event/debra-local-connect-belfast/
LOCATION:Titanic Hotel\,Belfast\, The Titanic Quarter\, 8 Queens Rd\,\, Belfast\, Northern Ireland\, BT3 9DT\, United Kingdom
ORGANIZER;CN="Debra%2CThe Butterfly Skin Charity":MAILTO:Susan.Muller@debra.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251119T100000
DTEND;TZID=Europe/London:20251119T110000
DTSTAMP:20260410T184835
CREATED:20251105T172916Z
LAST-MODIFIED:20251105T173336Z
UID:6141-1763546400-1763550000@nirdp.org.uk
SUMMARY:Omagh Support Group
DESCRIPTION: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 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/omagh-support-group-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251113T110000
DTEND;TZID=Europe/London:20251113T120000
DTSTAMP:20260410T184835
CREATED:20251105T173029Z
LAST-MODIFIED:20251105T173350Z
UID:6143-1763031600-1763035200@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-2/
LOCATION:Dobbin Street Community Center\, 11A Dobbin St\, Armagh\, BT61 7QQ\, United Kingdom
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251030T110000
DTEND;TZID=Europe/London:20251030T120000
DTSTAMP:20260410T184835
CREATED:20250927T153943Z
LAST-MODIFIED:20251017T202917Z
UID:6048-1761822000-1761825600@nirdp.org.uk
SUMMARY:Omagh Support Group
DESCRIPTION: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 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/omagh-support-group/
LOCATION:Omagh Fire Station\, 1 Killybrack Rd\, Omagh\, BT79 7DG\, United Kingdom
ORGANIZER;CN="Northern Ireland Rare Disease Partnership":MAILTO:support@nirdp.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251016T110000
DTEND;TZID=Europe/London:20251016T120000
DTSTAMP:20260410T184835
CREATED:20250927T154241Z
LAST-MODIFIED:20250927T154241Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251008T140000
DTEND;TZID=Europe/London:20251008T160000
DTSTAMP:20260410T184835
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251002T150000
DTEND;TZID=Europe/London:20251002T160000
DTSTAMP:20260410T184835
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:20260410T184835
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250929T080000
DTEND;TZID=Europe/London:20251024T160000
DTSTAMP:20260410T184835
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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