Northern Ireland, United Kingdom
Joined January 2019
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Kerry Longmore retweeted
Join us at our AGM next week – all welcome!
Hear updates from leading experts:
👨⚕️ Stephen O’Neill on NIKRF research
👩⚕️ Dr Aisling Courtney on transplantation in NI
📅 Wed 17 Sept, 7pm
📍 Seminar Room, Level 11, Belfast City Hospital
Light refreshments served – see you there!
Kerry Longmore retweeted
Caring for a child with a #RareDisease comes with #financial, #social, and #emotional challenges. Researchers at #UCD want to understand your experience to create positive change. Please complete this short survey to have your voice heard: healthandagriscience.fra1.qu… #RareDiseaseNI
ALT Cartoon image of lady with a clipboard and statistics symbols surrounding it in the top right corner. QR code for survey link below the text.
Kerry Longmore retweeted
Caring for a child with a #RareDisease comes with #financial, #social, and #emotional challenges. Researchers at #UCD want to understand your experience to create positive change. Please complete this short survey to have your voice heard: healthandagriscience.fra1.qu… #RareDiseaseNI
ALT Cartoon image of lady with a clipboard and statistics symbols surrounding it in the top right corner. QR code for survey link below the text.
You are all invited to a Family Fun Day in honour of Belle-Rose, in aid of the kidney research team. #RARDTAC #kidneyresearch #RAiN #RenalResearchni #LightingTheWay #RareDiseaseNI #RareDisease
Kerry Longmore retweeted
That's us ready to go.... @balmoralshow Kidney Disease ...We Got This! Stand 49 Eikon Pavilion #LightingTheWay #kidneyresearch #kidneydisease – at Halftown, Northern Ireland
Kerry Longmore retweeted
❕40,000 people in NI live with a chronic neurological condition
📣 Take the opportunity to share your views on analysis, findings and proposed recommendations in the final report of the Regional Review of Neurology Services
🗣️Registration also open for public engagement events
The Department has launched a public consultation on the final report of the Regional Review of Neurology services.
➡️Read more: health-ni.gov.uk/news/health…
ALT A photo of signage for the Department of Health with text beside it which reads: "Neurology Services Consultation"
Kerry Longmore retweeted
We did it! Team @CPH_QUB completed the Belfast Marathon in support of @NIKRFcharity – raising £500 and counting! Huge thanks to our amazing team, @QUBelfast charity committee, all at CPH (staff & students), and Susan from NIKRF for your incredible support!
Caring for a child with a #RareDisease comes with #financial, #social, and #emotional challenges. Researchers at #UCD want to understand your experience to create positive change. Please complete this short survey to have your voice heard: healthandagriscience.fra1.qu… #RareDiseaseNI
ALT Cartoon image of lady with a clipboard and statistics symbols surrounding it in the top right corner. QR code for survey link below the text.
Caring for a child with a #RareDisease comes with #financial, #social, and #emotional challenges. Researchers at #UCD want to understand your experience to create positive change. Please complete this short survey to have your voice heard: healthandagriscience.fra1.qu… #RareDiseaseNI
ALT Cartoon image of lady with a clipboard and statistics symbols surrounding it in the top right corner. QR code for survey link below the text.
Kerry Longmore retweeted
On the 7th of May, we mark #CystinosisAwarenessDay with some of our wider, global cystinosis community 💛
How can you help? Share this post to help us raise awareness 📢
#CystinosisAware 🌏
Calling those that care for someone with a rare condition. You are warmly invited to attend Caring with Rare: The Soft Launch of the Rare Disease Carer Support Tool
4th April, 9.30-1.30 pm,
Riddel Hall, Stranmillis.
events.humanitix.com/caring-…
Calling those that care for someone with a rare condition. You are warmly invited to attend Caring with Rare: The Soft Launch of the Rare Disease Carer Support Tool
4th April, 9.30-1.30 pm,
Riddel Hall, Stranmillis.
events.humanitix.com/caring-…
Calling those that care for someone with a rare condition. You are warmly invited to attend
Caring with Rare: The Soft Launch of the Rare Disease Carer Support Tool.
events.humanitix.com/caring-…
@qubengagemhls_d @a_j_mcknight @Christinezoo @NI_RDP @CarersNI @22q11Ireland
Kerry Longmore retweeted
Please help @thedaisygarland this Purple Day (worldwide #epilepsy awareness day, March 26th) by joining us in raising epilepsy awareness and much-needed funds for our vital work 💜 Thank you x
thedaisygarland.org.uk/Appea…
The LifeArc Centre for Acceleration of Rare Disease Trials, would like for you to join their Lived Experience Advisory Panel to help deliver a new approach for Rare Disease trials:
lnkd.in/eM9Gzm-G
rarediseasetrials.org.uk/lea…
#raredisease #patient #patientinvolvement
The LifeArc Centre for Acceleration of Rare Disease Trials, would like you to join their Lived Experience Advisory Panel to help deliver a new approach for Rare Disease trials:
lnkd.in/eM9Gzm-G
rarediseasetrials.org.uk/lea…
#raredisease #patient #patientinvolvement
The LifeArc Centre for Acceleration of Rare Disease Trials, would like you to join their Lived Experience Advisory Panel to help deliver a new approach for Rare Disease trials:
lnkd.in/eM9Gzm-G
rarediseasetrials.org.uk/lea…
#raredisease #patient #patientinvolvement
The LifeArc Centre for Acceleration of Rare Disease Trials, would like for you to join their Lived Experience Advisory Panel to help deliver a new approach for Rare Disease trials:
lnkd.in/eM9Gzm-G
rarediseasetrials.org.uk/lea…
#raredisease #patient #patientinvolvement
Kerry Longmore retweeted
Are you interested in volunteering with Angel Eyes NI?
Please join us for an online information session on Wednesday 9th April at 8pm online via Zoom.
Booking is essential. Please contact [email protected] or text 07871635236
ALT two person's arms reaching out together
We have learned, we have spoken, we have socialised and we have eaten cake!
Thank you to everyone who has supported, attended and contributed to these events.
#RareDisease #RareDiseaseNI #RareDiseaseDay2025 #strongertogether
