NIRDchat

Fiona, volunteer for @NI_RDP Chat about #raredisease issues in Northern Ireland. Building connections, sharing info. May be some rambling. Also @speccymcspec

[NIRDchat @NIRDchat]

Draft plan for consultation http://t.co/SkFHscVRLm Will this work for you/ yours? What would help? #RareDisease #NIRDchat

[NIRDchat @NIRDchat]

patient centred? empowered patients? or 'nutcase'? Gotta love the psychologist https://t.co/ZqdedTi6Pm

[Anne Marie Cunningham @amcunningham]

If you want organisation that cares about personal values of patients, then need culture that cares about person values of staff #HDIH2015

[Genomics England @GenomicsEngland]

How could #genomics change clinical practice? Find out in this short film: https://t.co/en60bNIXrZ #genomes100k

[ןǝɥɔɐᴚ ɥɔuʎ˥ @rachelmlynch]

Nothing about us without us! #IPPOSI #Eupati #patientsinvolved

[NIRDchat @NIRDchat]

Delighted to volunteer for @NI_RDP along with strong & effective HD advocates https://t.co/acHTWU0xdi

[jackie harrison @jaq421]

@NIRDchat Please Share this Huntington's disease awareness vid thank you x https://t.co/tPUHEsBsmE
#1Yorkshirefamily3generations

[NIRDchat @NIRDchat]

What a week to be away! Delighted to have launch of #rarediseaseni plan & NI Genomic Medicine Centre. Great progress for us all :)

[NIRDchat @NIRDchat]

Help NI take a huge step towards better health https://t.co/3cIyO9y8U3…
@little_pengelly @MaeveMcLaughli1 @FearghalSDLP @SimonHamilton

[NIRDchat @NIRDchat]

Thanks @MaeveMcLaughli1 for the RT #raredisease issues are not rare. We need @SimonHamilton to sign the plan and let us get on with the work

[NIRDchat @NIRDchat]

Please encourage! @little_pengelly @FearghalSDLP @MaeveMcLaughli1 @ClaireHanna @newbelfast @allianceparty @uuponline https://t.co/jj3DmIMjky

[NIRDchat @NIRDchat]

est. 100K in NI affected by #RareDisease @SimonHamilton can help. Pls encourage him to do so https://t.co/MsLRv9YBAm

[NIRDchat @NIRDchat]

let's be the best we can be https://t.co/TTe0yPh7LS

[E Lothian Welcomes @RefugeeELothian]

The Syrian Refugee Crisis Explained Perfectly With a Simple Animation http://t.co/ZXK4PCjeF9 via @VagaTweets

[NIRDchat @NIRDchat]

Let's do this! @MeehawH @MNDA_NI @MDnews_NI @22Q11_Ireland @hope4mefibroni @mesupportni @tescoshopper https://t.co/TirTxpb1tX

[NIRDchat @NIRDchat]

let's do this! @soo_cchsc @DrStevenWilson @NICONtweets @DrStevenKinnear @drlfarrell @Cgrimes3 @KeelaToo https://t.co/TirTxpb1tX

[Anne Marie Cunningham @amcunningham]

Delighted that #medx is going to have @mjseres as #epatient in residence :) So much for everyone to gain from this.

[Matt Haney @matthaneymd]

"People can be cured without being healed and healed without being cured, hopefully moving toward both." @megamaley @CanSurround #MedX

[Nick Vu @nicholasttvu]

Please don't tell me just to be positive. Honor my pain and my vulnerability #MedX

[NIRDchat @NIRDchat]

How might we help with that? #MedX https://t.co/ugv9s4Xyqv

[PF Anderson @[email protected] @pfanderson]

"We come from such a long history of paternalism" "We've never been trained to listen" #medx

[Nisha Pradhan, MD @Nisha_Pradhan]

Emphasis on the word “evolves”. No one is asking for everything to be perfect. We’re just asking you to try. #MedX https://t.co/ImWX52TBCg

[Heather Corini (formerly Aspell) @hcorini]

Requires reoccurring themes from #medx: listening, learning about patient (unique identities, QoL goals) and empathy https://t.co/0cn2fpvP5q

[Nick Dawson @nickdawson]

“Healthcare is relationships” — @mjseres closing #medx