Kind , honest and respectful
Ballyhalbert, Northern Ireland
Joined December 2015
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Thank you @QUBelfast supporting people with #RareDisease #RareDiseaseNI. #RareDiseaseDay2025 #LightUpForRare. Looks great & support very much appreciated!
ALT QUB lit up for rare disease
ALT QUB lit up for rare disease image
ALT QUB lit up for rare disease purple with two people
ALT Image of QUB lit up in support of rare disease day
So excited! Been a long time coming (2 years!) - thanks @LongmoreKerry making it happening and modelling so well - sustainable & ecofriendly…#RARDTAC #RareDiseaseNI
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Thank you @camraredisease for the opportunity to participate in #RareSummit23. Enjoyed meeting colleagues, known & new for #RareDiseaseNI. #RareDisease #StrongerTogether is powerful! Promoting #PPIE ✅✅✅ – at Hinxton, England
Delighted to have arrived @wellcomegenome & looking forward to joining #RareDisease experts at the @camraredisease #RAREsummit23 on 12 Oct in Cambridge. @CPH_QUB #RareDiseaseNI @qubengagemhls_d @RAiNAllIreland
Brilliant event. Really appreciate @KarenDouglas_NI, Robert Adair & @MMcIlveenDUP and @ANDborough council’s support for #RareDiseaseNI over the years. THANK YOU
Many thanks to @ANDborough Mayor @KarenDouglas_NI and colleagues raising awareness of #RareDiseaseNI today #RareDiseaseDay2023 #RARDTAC #RAiN cream tea most welcome 👏 👏 👏
@AerLingus pls consider passengers who can’t stand. If the armrests don’t rise fully, some of us can’t get into those seats! When using the aisle chair, having passengers board concurrently is #embarrassing & #illogical as the chair blocks the aisle! #disability #travel. – at Northern Ireland, United Kingdom
Flying with @AerLingus today…baffled by the large number of people using wheelchairs for priority boarding in USA…who on arrival stood up, got their luggage easily from overhead bins, & promptly walked off the plane unaided….#Travel #Disability #CommonSense – at Northern Ireland, United Kingdom
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@Argos_Online please update delivery Info. Waited all day for £300+ item on delivery date - no word & no product. @ArgosHelpers I lost a days wages. An hr on live chat & 1/2 hr in phone Q b4 speaking to someone…ooops it was delayed @YodelOnline isn’t good enough - comms impt! – at Northern Ireland, United Kingdom
Devastated! How can OT get things so wrong consistently? After much grief & eventually ~3 month wait wheelchair delivered….won’t fit through front / back door😱. Internal door 36”👇🏻. We bought & collected 1 the next day that works perfectly. @setrust @NI_RDP @RCOTNIreland
Expecting @BTGroup engineer 12-2 pm today…stayed home as requested…just got a message saying expert visit moved to July!!!! Really? What about my work? Why No #apology or #explanation? Why no advance notice please? – at Northern Ireland, United Kingdom
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So true...who else would work for £1.92 / hr...& many vital #carer s work 24/7!!! – at Northern Ireland, United Kingdom
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I still can not get my flu vaccine from my local GP as it was paused a few months ago ! Still waiting – at Northern Ireland, United Kingdom
For the first time and on the record health officials here confirm that if #Pfizervaccine is given go ahead NI “is good to go with rollout on Dec 14th. “ @BBCNewsNI
@mirmrtn @22Q11_NI @sujas15 @myawareUK @BehcetsUK @christinezoo I’m printing this for the car window today 🌞 #DistanceAware :)
Using the very clever #DistanceAware templates from
@iliff_helen & team I've adapted a generic one as requested by some local folk. I hope this was what you wanted 😃 #RareDiseaseNI @NI_RDP @CPH_QUB #ThankYou for making these so easy to 'personalise' and use beyond Wales!
Agreed!
For most of the population yes...but I will also be ultra cautious. Remember not everyone is as capable as others & #COVID19 is still a likely horrendous hospital experience (many #RareDiseaseNI pts need 24/7 1-1 support) & death sentence if caught. #NotWorthIt @DamianFog
So frustrating! General public needs reminded this is very serious for some of us! Please help us stay safe & follow #SocialDistancing
How many times do people walk into a shop and press the ‘button’ on the top of hand sanitiser...yet when a scientist reads the label it’s only 30% alcohol & nothing that would inactivate / remove #COVID-19 #NotReassuring.
So important. So many appointments delayed & cancelled...centres of excellence are across the water & nowhere to stay tho clinics are opening...#RareDiseaseNI @NI_RDP
& what about people with #RareDiseaseNI who / whose family need to stay overnight for specialist medical treatment. It’s tiring travelling long distances. Please open hotels ; Airbnb to help keep people as healthy as possible @NI_RDP @bbcnewsline @StephenNolan @rarediseaseuk
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A lot of hard work by the teams Big thank you to @JulieMcMullan11 geting everything ready for Rare Disease Day today and all of the team who made it all come together so well! @NI_RDP @CPH_QUB @RareDiseasesIE #RareDiseaseNI
Great Day at the Joint North / South Rare Disease Day in Riddel Hall Belfast today Well attended and great Speakers, Well done to all the Prize winners today.
